# Novellia Blog
> Latest updates from Novellia
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## Pages
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## Posts
### What Is Primary Biliary Cholangitis? Symptoms, Diagnosis, and What's Changed in Treatment
URL: https://blog.novellia.com/what-is-primary-biliary-cholangitis-symptoms-diagnosis-and-whats-changed-in-treatment/
Last updated: 2026-10-09T22:29:32.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: October 9, 2026

*If you've been diagnosed with primary biliary cholangitis, or you're trying to understand a loved one's diagnosis, here's what it actually is, how doctors confirm it, and what the treatment journey looks like today.*

## **What is primary biliary cholangitis?**

PBC is a chronic autoimmune disease that affects the small bile ducts inside the liver. Bile ducts carry bile, a fluid your liver makes to help digest fat and clear out waste, from the liver into the intestine.

In PBC, the immune system mistakenly attacks the cells lining these small ducts. Over time, the ducts become inflamed and scarred, and bile backs up inside the liver instead of draining normally. That buildup is called cholestasis, and it's what damages liver tissue over the years, and, left untreated, can eventually progress to cirrhosis.

PBC used to be called "primary biliary cirrhosis," and you may still see that older name in some records or research. The name changed because most people diagnosed today are at an earlier stage and don't yet have cirrhosis. Catching PBC early, before scarring sets in, significantly affects long term outcomes.

## **Who gets PBC, and what are common symptoms?**

PBC is considered a rare disease, and it disproportionately affects women, particularly those in their 40s to 60s. Researchers don't fully understand why the immune system targets the bile ducts, but genetics and environmental exposures both appear to play a role.

Some people with PBC have no symptoms in the early stages and are only diagnosed after a routine blood test turns up an abnormal liver enzyme called alkaline phosphatase, or ALP. When symptoms do appear, the two most common are:

- **Fatigue** that doesn't improve with rest and can be severe enough to affect daily life
- **Itching (pruritus)** which often starts on the hands and feet and can spread, sometimes worsening at night

Other symptoms can include dry eyes and mouth, discomfort in the upper right abdomen, and, in more advanced disease, jaundice (yellowing of the skin or eyes). Because fatigue and itching overlap with many other conditions, PBC is sometimes missed or misattributed for months or years before a diagnosis is made.

## **How is PBC diagnosed?**

There's no single symptom that confirms PBC, so doctors typically look at three pieces of evidence together:

- **Liver blood tests.** An elevated ALP level, often alongside other liver enzymes, is usually the first clue.
- **Antimitochondrial antibodies (AMA).** Roughly 90 to 95 percent of people with PBC have this specific antibody in their blood, and its presence is considered highly specific to the disease. Some people with PBC are AMA-negative, so a negative result doesn't rule it out.
- **Liver imaging or biopsy.** Imaging can help confirm the pattern of bile duct damage, and in unclear cases, a liver biopsy provides a direct look at the tissue.

If you've had unexplained itching or fatigue along with abnormal liver tests, you may want to ask your doctor directly whether PBC has been considered and whether an AMA test has been run.

## **What's changed recently in PBC treatment**

For decades, the foundation of PBC treatment has been a single drug: ursodeoxycholic acid, or UDCA. UDCA helps bile flow more easily and, in most patients, slows disease progression significantly. It remains the essential first-line therapy for everyone diagnosed with PBC.

The challenge is that UDCA doesn't work for everyone. Up to 40 percent of patients have an inadequate response, meaning ALP levels don't come down enough even with consistent use, and UDCA does little to relieve the itching and fatigue symptoms that many patients find most disruptive day to day.

For a long time, the main option for patients who don’t respond to UDCA was a drug called obeticholic acid (brand name Ocaliva). However in 2025, post-market data showed a risk of serious liver injury, including in patients without cirrhosis, and obeticholic acid was pulled from the U.S. market. 

In its place, two newer medications have moved to the forefront of second-line PBC care:

- [**Elafibranor**](https://www.nejm.org/doi/full/10.1056/NEJMoa2306185?ref=blog.novellia.com)(brand name Iqirvo), which received FDA approval in 2024
- [**Seladelpar**](https://www.nejm.org/doi/full/10.1056/NEJMoa2312100?ref=blog.novellia.com)(brand name Livdelzi), also approved in 2024

Both belong to a class of drugs called PPAR agonists, which work through a different pathway than UDCA and obeticholic acid to reduce bile acid buildup and calm liver inflammation. In clinical trials, both drugs helped a meaningful share of patients bring ALP levels down, and importantly, both also showed improvement in pruritus, the itching that UDCA alone rarely helps. This is a fast-moving area of PBC care, and treatment decisions are highly individual.

## **What to bring up at your next appointment**

If your last conversation with your medical provider about PBC treatment happened before 2024, your treatment options may have changed. That's true whether you're newly diagnosed, doing well on UDCA alone, or have been managing an inadequate response for years without feeling like your options were fully explored.

- *"What is my current ALP level, and is it in the range considered an adequate response to treatment?"*
- *"If I was ever prescribed obeticholic acid, how has my treatment plan been updated since its withdrawal?"*
- *"Am I a candidate for elafibranor or seladelpar?"*

## **Why patient registries matter for a disease like PBC**

Because PBC is rare and its treatment landscape is changing quickly, much of what researchers know about how these newer therapies perform in the real world, beyond the controlled setting of a clinical trial, depends on data from patients actually living with the disease. Registries gather real-world experiences directly from patients so researchers can understand how treatments perform across different ages, disease stages, and backgrounds, not just within a trial's specific criteria. Registries also help researchers understand patient reported outcomes, or data that is shared in between doctor visits, to better understand different symptoms such as itching and fatigue.

If you're managing PBC, your unique experience is exactly the kind of information that helps build a fuller picture for the patients who come after you.

**About Novellia: Novellia is a patient health platform that helps people consolidate their medical records, understand their health data, and participate in research studies on their own terms. Patients stay in control of their data at every step.**

Sources

[https://www.nejm.org/doi/full/10.1056/NEJMoa2306185](https://www.nejm.org/doi/full/10.1056/NEJMoa2306185?ref=blog.novellia.com)

[https://www.nejm.org/doi/full/10.1056/NEJMoa2312100](https://www.nejm.org/doi/full/10.1056/NEJMoa2312100?ref=blog.novellia.com) 

[https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis/symptoms-causes/syc-20376874](https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis/symptoms-causes/syc-20376874?ref=blog.novellia.com)
### ATTR-CM Treatment: Symptoms, Diagnosis, and Discoveries
URL: https://blog.novellia.com/attr-cm-treatment-symptoms-diagnosis-and-a-rapidly-expanding-landscape-of-care/
Last updated: 2026-10-06T00:11:14.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: September 25, 2026

Transthyretin amyloid cardiomyopathy, or ATTR-CM, is a heart condition that is frequently mistaken for other common forms of heart failure. Many patients live with it for years before a formal diagnosis. This guide covers what ATTR-CM is, why it's so easy to miss, and how ATTR-CM treatment has gone from a single drug to a highly complex field in just a few years.

## **What is ATTR-CM?**

ATTR-CM is a progressive disease in which a protein called transthyretin (TTR), normally made in the liver to help carry thyroid hormone and vitamin A through the bloodstream, becomes unstable and misfolds. The misfolded protein clumps together into amyloid fibrils that deposit in the heart muscle, causing the walls of the heart to thicken and stiffen. Over time, this makes it harder for the heart to relax, fill with blood, and eventually pump effectively, a pattern known as restrictive cardiomyopathy.

There are two forms of the disease. Wild-type ATTR-CM (wATTR-CM) is an aging-related condition, unconnected to any inherited mutation, that mostly affects men in their 70s and 80s. Hereditary ATTR-CM (hATTR-CM) is caused by a mutation in the TTR gene, tends to show up earlier in life, and can also affect the nerves. In the United States, the most common disease-causing variant, Val122Ile, is a significant and often under-recognized cause of heart failure that disproportionately affects Black Americans.

ATTR-CM is considered rare, but likely far less rare than once believed. Researchers estimate around 100,000 people in the U.S. are living with it, yet only a small fraction have ever been diagnosed. Autopsy studies suggest amyloid deposits are present in a meaningful share of elderly hearts, hinting at a much larger undiagnosed population than current numbers capture.

## **ATTR-CM symptoms: what it looks like day to day**

Because ATTR-CM mimics ordinary heart failure, symptoms are frequently attributed to other conditions. Patients and their doctors often describe:

- **Shortness of breath** with minimal activity or at rest
- **Fatigue and reduced exercise tolerance** that gradually worsens
- **Swelling in the legs, ankles, or abdomen** from fluid retention
- **Carpal tunnel syndrome**, sometimes years before any heart symptoms appear
- **Lightheadedness, fainting, or an irregular heartbeat**, often atrial fibrillation

A cluster of non-cardiac clues can also point toward ATTR-CM before a cardiologist is ever involved: bilateral carpal tunnel syndrome, spinal stenosis, and biceps tendon rupture have all been flagged as early warning signs that can precede heart symptoms by years.

## **Why ATTR-CM gets mistaken for something else**

ATTR-CM is most often confused with hypertensive heart disease or hypertrophic cardiomyopathy, since all three can produce a thickened left ventricle on an echocardiogram. It also overlaps with the far more common causes of heart failure with preserved ejection fraction seen in older adults, which is part of why it's easy for clinicians to attribute symptoms to aging or routine heart failure rather than dig further.

Getting to the right diagnosis usually involves a cardiologist, imaging, and blood tests to rule out a related condition called light-chain (AL) amyloidosis. Bone scintigraphy, a nuclear medicine scan that binds selectively to amyloid deposits in the heart, has become central to non-invasive diagnosis and, combined with blood and urine tests to exclude AL amyloidosis, can confirm ATTR-CM without a biopsy in many cases. Genetic testing is then used to determine whether the disease is wild-type or hereditary. Even with these tools available, diagnosis is frequently delayed, and misdiagnosis remains common enough that disease awareness campaigns continue to target both cardiologists and primary care physicians.

## **ATTR-CM vs. ATTR-PN: when amyloid affects the nerves**

ATTR-CM is closely related to transthyretin amyloid polyneuropathy, or ATTR-PN. Both are caused by the same misfolded TTR protein, but here the amyloid builds up mainly in the peripheral and autonomic nerves rather than the heart. ATTR-PN is almost always hereditary, and it often starts earlier in life, sometimes in a person’s 30s or 40s. Early signs include numbness, tingling, or burning pain that begins in the feet and slowly moves up the legs and into the hands, along with autonomic symptoms like dizziness on standing, diarrhea or constipation, unintended weight loss, and erectile dysfunction.

The two conditions also often overlap. Many people with hereditary ATTR have both heart and nerve involvement, which is why a new ATTR-CM diagnosis, especially a hereditary one, should prompt a check for neuropathy, and vice versa.

## **ATTR-CM treatment today: three approved options and a fast-moving landscape**

For years, there was exactly one ATTR-CM treatment: [tafamidis](https://clinicaltrials.gov/study/NCT01994889?ref=blog.novellia.com), approved by the FDA in 2019 as the first therapy shown to reduce mortality and cardiovascular hospitalization in this disease. Tafamidis works by stabilizing the TTR protein in its correct shape, preventing it from breaking apart and forming new amyloid deposits. It doesn't reverse existing damage, but it slows disease progression.

That quickly changed when [Acoramidis](https://clinicaltrials.gov/study/NCT03860935?ref=blog.novellia.com) (Attruby), another oral TTR stabilizer, was approved in November 2024 after the ATTRibute-CM trial showed a significant reduction in death and cardiovascular hospitalization. 

Then in March 2025, [vutrisiran](https://clinicaltrials.gov/study/NCT04153149?ref=blog.novellia.com) (Amvuttra) became the third approved ATTR-CM treatment and the first with a fundamentally different mechanism: rather than stabilizing TTR, it's a gene-silencing therapy delivered by injection every three months that reduces production of the protein at its source in the liver. In the HELIOS-B trial, vutrisiran met all ten of its primary and secondary endpoints, including a 28 percent reduction in the combined risk of death and cardiovascular events compared to placebo.

A fourth candidate is close behind: [**Eplontersen**](https://clinicaltrials.gov/study/NCT04136184?ref=blog.novellia.com), another TTR gene silencer, is being evaluated for ATTR-CM in the ongoing Phase 3 CARDIO-TTRansform trial.

Because there are no head-to-head trials between tafamidis, acoramidis, and vutrisiran, choosing among them today is often driven by cost, dosing preference, insurance coverage, and individual patient factors rather than clear-cut superiority data. All three carry substantial price tags: tafamidis and acoramidis run over $240,000 per year, and vutrisiran's list price is even higher, though most patients pay little to nothing out of pocket thanks to insurance coverage and manufacturer support programs. Going from zero approved therapies before 2019 to three approved ATTR-CM treatments today, with a fourth in late-stage trials, represents one of the fastest therapeutic turnarounds in a rare cardiac disease.

## **Why patient registries and real-world data matter for ATTR-CM**

Even with three approved therapies now on the market, most of what's known about how ATTR-CM behaves over the long term, across different ages, genotypes, and treatment histories, still comes from clinical trial populations that don't fully reflect the diversity of real-world patients. 

If you're living with ATTR-CM, details about your own experience such as how treatment has affected your strength, function, and daily life, what barriers you've faced getting diagnosed or treated, are significant for future research. That kind of real-world information is missing from clinical trials, and what helps move the field forward for the next patient who gets this diagnosis.

**About Novellia: Novellia is a patient health platform that helps people consolidate their medical records, understand their health data, and participate in research studies on their own terms. Patients stay in control of their data at every step.**

**Sources**

[https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/transthyretin-amyloid-cardiomyopathy-attr-cm](https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/transthyretin-amyloid-cardiomyopathy-attr-cm?ref=blog.novellia.com)

[ClinicalTrials.gov![](https://static.ghost.org/v5.0.0/images/link-icon.svg)](https://clinicaltrials.gov/study/NCT04136184?ref=blog.novellia.com)

[ClinicalTrials.gov![](https://static.ghost.org/v5.0.0/images/link-icon.svg)](https://clinicaltrials.gov/study/NCT04153149?ref=blog.novellia.com)

[ClinicalTrials.gov![](https://static.ghost.org/v5.0.0/images/link-icon.svg)](https://clinicaltrials.gov/study/NCT03860935?ref=blog.novellia.com)

[ClinicalTrials.gov![](https://static.ghost.org/v5.0.0/images/link-icon.svg)](https://clinicaltrials.gov/study/NCT01994889?ref=blog.novellia.com)
### Multifocal Motor Neuropathy: Symptoms, Diagnosis, and Treatment
URL: https://blog.novellia.com/multifocal-motor-neuropathy-symptoms-diagnosis-and-a-shifting-treatment-landscape/
Last updated: 2026-10-06T00:12:24.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: September 11, 2026

Multifocal motor neuropathy, or MMN, is a rare disease that most people, including some clinicians, have never heard of. In this article, we'll walk through what MMN actually is, why it's so easy to miss, where treatment stands today, and how patient advocacy is helping close the gaps.

## **What is multifocal motor neuropathy?**

MMN is a rare, chronic autoimmune condition in which the immune system attacks motor nerves carrying signals from the brain to the muscles. Over time, this produces slowly worsening weakness which often starts in one hand or wrist and spreads. 

The "multifocal" in the name refers to that unevenness: MMN doesn't strike the body symmetrically the way many neuropathies do. Someone might lose strength in their right hand while their left hand and both legs stay largely unaffected for years. In nerve conduction studies, this shows up as a hallmark finding called conduction block, essentially a spot where electrical signals traveling down the nerve slow down or stop entirely at a specific, identifiable point.

MMN is very rare, affecting somewhere in the range of 1 in 100,000 people worldwide, with men diagnosed more often than women, typically between their 30s and 50s. Unlike many autoimmune conditions, it isn't inherited, and unlike related conditions in the peripheral neuropathy family, it almost never causes numbness, tingling, or pain. It's a purely motor problem.

## MMN symptoms: what it looks like day to day

Here's what MMN looks like for patients. Because MMN progresses slowly and unevenly, early symptoms are easy to overlook. Patients and their doctors often describe:

- **Weakness in one hand or wrist** that makes it hard to turn a key, button a shirt, or hold onto small objects
- **A "wrist drop,"** where the wrist can't be extended upward the way it normally would
- **Muscle twitching or fine dimpling under the skin** (fasciculations), which can look alarming on its own
- **Weakness confined to specific nerve territories** rather than spreading evenly, so one limb may be affected years before another

MMN does not typically cause sensory loss. There's no numbness or tingling, and reflexes and muscle tone generally stay normal, even in weakened limbs. That absence of sensory involvement is actually one of the more useful diagnostic clues, because it's one of the main things that separates MMN from conditions with overlapping symptoms.

## MMN vs. ALS: why MMN often gets mistaken 

The condition MMN is often confused with is ALS. Both conditions cause progressive, asymmetric muscle weakness, and both can start with a disruption to mobility. But MMN has a much better prognosis: it doesn't affect life expectancy, doesn't touch the muscles involved in breathing or swallowing, and, critically, there are effective treatment options available for MMN. 

Getting to the right diagnosis usually takes a neurologist, a detailed history, and a set of specific tests: electrodiagnostic studies (nerve conduction studies and EMG) to look for conduction block, and blood testing for IgM antibodies to GM1, a marker found in the large majority of MMN patients. Even with these tools available, diagnosis can take years. Survey data collected by patient advocacy groups has repeatedly found that most people with MMN spend well over a year, and often two to three years or more, being treated for the wrong condition before someone identifies MMN correctly.

## MMN treatment today: IVIg and what's coming next

For over a decade, the treatment story for MMN has centered on one therapy: intravenous immunoglobulin, or IVIg. Gammagard Liquid 10% has been the only FDA-approved treatment for MMN since 2012, and it remains the standard of care, which is administered monthly in a clinic or hospital setting. IVIg won't reverse existing nerve damage, but it helps many patients regain some strength and slows how quickly the disease progresses. Many patients also have the option of switching to subcutaneous immunoglobulin (SCIg), a self-administered version that some find easier to fit into daily life.

The catch is that IVIg and SCIg are lifelong commitments. Symptoms tend to return once treatment stops, infusions or injections need to be repeated every few weeks, and for some patients, effectiveness can wane over time, requiring higher doses.

That's starting to change. A new class of therapies, complement pathway inhibitors, is moving through clinical trials aimed at a different part of the immune attack than IVIg addresses. Two candidates are furthest along:

- [**Empasiprubart**](https://clinicaltrials.gov/study/NCT06284954?ref=blog.novellia.com) has produced encouraging early data in a Phase 2 study and has since moved into EMPASSION, a Phase 3 trial comparing it directly against IVIg. Results from the Phase 3 study are expected to be announced sometime at the end of 2026\.
- [**DNTH103**](https://clinicaltrials.gov/study/NCT06282159?ref=blog.novellia.com) is being studied in the Phase 2 MoMeNtum trial, with results also expected towards the end of 2026.

Neither of these has reached approval yet, and IVIg remains the only FDA-sanctioned option today. But for a disease that's gone essentially unchanged on the treatment front since 2012, having two different therapies in late-stage development is a meaningful shift for patients.

## **Why patient registries and real-world data matter**

Even with new therapies advancing through trials, most of what's known about how MMN behaves over the long term, across different ages, severities, and treatment histories, still comes from a relatively small pool of patients and studies. Registries and structured patient-reported data help fill that gap. They're what eventually shapes treatment guidelines, supports insurance coverage arguments, and gives researchers a clearer picture of who responds best to which therapy, and why.

If you're living with MMN, details about your own experience — how treatment has affected your strength and function over time, what access barriers you've run into — matter more than they might seem. Novellia's MMN registry is gathering exactly this kind of patient-reported data. [Learn more and join the MMN Insights registry](https://pages.novellia.com/mmn-insights?ref=blog.novellia.com) to help shape the future of MMN treatment and care.

**About Novellia: Novellia is a patient health platform that helps people consolidate their medical records, understand their health data, and participate in research studies on their own terms. Patients stay in control of their data at every step.**  

**Sources**

[What Is Multifocal Motor Neuropathy (MMN)?MMN is an autoimmune condition that causes muscle weakness. It worsens slowly over time. Learn about treatment to help manage it.![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/icon/touch-icon-iphone-5b57154b-9327-480f-9e13-4ea014786679.png)Cleveland Clinic![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/thumbnail/aa41aba3-3189-4d99-9f49-b70fe103eef2-7a56feb1-c355-48b1-a060-d9c69a6831c2.jpg)](https://my.clevelandclinic.org/health/diseases/multifocal-motor-neuropathy-mmn?ref=blog.novellia.com)

[ClinicalTrials.gov![](https://static.ghost.org/v5.0.0/images/link-icon.svg)](https://clinicaltrials.gov/study/NCT06282159?ref=blog.novellia.com)

[ClinicalTrials.gov![](https://static.ghost.org/v5.0.0/images/link-icon.svg)](https://clinicaltrials.gov/study/NCT06284954?ref=blog.novellia.com)
### Novellia Collections: Organize Your Health Records How You Think About Your Health
URL: https://blog.novellia.com/introducing-collections-organize-your-health-records-the-way-you-actually-think-about-your-health/
Last updated: 2026-10-06T00:07:27.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: August 26, 2026

Pulling together everything related to a specific diagnosis before an appointment can be challenging! You might have labs from multiple providers, imaging reports scattered across various portals, and clinical notes from specialists in different hospitals. This data is all stored in your Novellia account, but collections makes it easier to find the ones you actually need at the moment. 

## **What is Collections?**

Collections is a new feature in Novellia that lets you group your health records however it makes sense to you. By condition, by treatment, by provider, by time period, by anything. 

Instead of scrolling through your full record history to find what you need, you can create a Collection once and your records are there whenever you come back. Prepping for a cardiology appointment? Open your heart health Collection. Starting a new medication and want to track everything related to it? Build a Collection around that treatment. Managing multiple conditions at once? Each one gets its own organized view. 

Your records become much easier to navigate. 

![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/2026/08/data-src-image-e4980c2c-27b5-4a0f-9cb3-8e49be174401.png)

## **How to get started with Collections** 

Collections is available now on Novellia's web platform. Here's how to access it: 1\. **Log in to your Novellia account** at novellia.com. 

2\. **Go to the Collections section** in the main navigation.

3\. **Create your first Collection** from the Collections overview page, or use the universal "+ Add" menu from anywhere in the app. 

You can also **feature Collections on your Home view**, so your most-used ones are front and center every time you open Novellia. Every Novellia account also comes with two default Collections built in: 

**Pinned records** — for the records you reach for most often. Lab results you reference regularly, a summary document, a pathology report you've needed at multiple appointments. 

**Hidden records** — for records you want to keep in your account but out of your main view. Older records that aren't currently relevant, duplicates, or anything that clutters your view without adding value right now. 

![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/2026/08/data-src-image-53b82e2d-476a-4b3f-b2ee-128729681b40.png)

## **Why organizing records around your conditions matters** 

The way most health platforms organize records (by date, by provider, by record type) makes sense from a data perspective, but doesn't always make sense from a patient perspective. 

When you're living with a diagnosis, your mental model of your health is usually organized around that condition. You think about your rheumatoid arthritis records, your chemotherapy labs, your post-surgery imaging. Not "records from May 2023" or "records from Provider ID 4471." 

Collections is built around that. You organize your records the way your brain already organizes your health journey, which makes it easier to find the documents you need. 

For patients managing multiple conditions, this is especially helpful. Instead of one undifferentiated list of hundreds of records across years of care, you have structured views that match how you mentally process and discuss each part of your health with different providers. 

## **What you can do with Collections right now** 

**Prepare for appointments more efficiently.** Before a specialist visit, open the Collection you've built for that condition and you have everything relevant in one place: recent labs, imaging, clinical notes, your own records. 

**Organize records around a treatment or medication.** If you're on a new treatment protocol, a Collection lets you keep track of everything related to it: baseline labs, follow-up results, side effect notes, visit summaries. You can build a coherent before-and-after record over time.

**Share context more clearly.** When you do need to share specific records with a new provider or a family member helping manage your care, a Collection makes it easy to identify exactly what's relevant rather than handing over your entire health history. 

**Clean up your view without losing records.** Records you don't need day-to-day stay in your account, accessible if you ever need them, but out of the way. 

## **Frequently asked questions about Collections** 

**Can I add the same record to more than one Collection?** 

Yes. A record can appear in multiple Collections at once. If a lab result is relevant to both your thyroid condition and your medication tracking, it can live in both without being duplicated. 

**What's the difference between Pinned and my own Collections?** 

Pinned is a default Collection designed for quick access to your most-used records. Your own Collections are organized however you define them, by condition, treatment, provider, or any other grouping. You can pin a Collection to your Home view so it behaves similarly to Pinned in terms of visibility. 

**Can I share a Collection with my doctor?** 

Sharing directly from Collections is not currently supported. For now, you can use your Collections to identify which records are relevant, then share those records individually through Novellia's existing sharing tools. 

**Is there a limit to how many Collections I can create?** 

No. Create as many as you need. Some patients find that a handful of condition-based Collections covers most of what they need. Others build more specific views. 

**Do Collections affect how my records are stored or shared with researchers?** 

No. Collections are a personal organizational layer on top of your records. They don't change anything about how your records are stored, what data Novellia holds, or your research participation settings.

**About Novellia: Novellia is a free patient health platform that helps people consolidate their medical records, track symptoms and medications, and participate in research that's relevant to their diagnosis. Patients stay in control of their data at every step.**
### Track Your Symptoms With Novellia and Make Your Appointments Easier
URL: https://blog.novellia.com/how-to-track-your-symptoms-with-novellia-and-why-it-makes-a-difference-at-your-next-appointment/
Last updated: 2026-10-06T00:07:57.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: August 6, 2026

Most patients have experienced this struggle: you sit down with your doctor, they ask how you've been feeling, and you’re struggling to recollect the weeks of fatigue, recurring headaches, and the random side effect from a new medication. It’s easy to leave the appointment without bringing up everything you wanted to say.

Novellia's symptom tracking feature offers a solution to this frustrating problem.

## **What symptom tracking is, and why it matters** 

Symptom tracking allows you to log what symptoms you're experiencing, how severe they are, and precisely when they happen. It sounds simple, but the impact on your care can be significant. 

Doctors make decisions based on the information in front of them, which is often spaced across long stretches of time. When that information is a verbal summary of the past few months (or years!) reconstructed from memory, it can be incomplete. When it's a log of consistent entries with timestamps, severity ratings, and notes, it's a lot more information to work off of, and gives data points for every day.

For symptoms and side effects, you can log when they happen and how severe they are, helping you notice patterns and share a more complete picture with your care team. 

For patients managing chronic illness, cancer treatment side effects, or complex conditions across multiple health systems that more complete picture can directly affect what gets prescribed, what gets investigated, and what gets missed. 

## **How symptom tracking works in Novellia**

Novellia's symptom tracking is designed to be simple, accessible, and easy to understand so that you'll actually use it. 

The updated symptom tracking feature includes a new chart, faster Quick Log, and a streamlined add-and-edit flow. The Quick Log feature means you can record a symptom in a few taps without navigating through multiple screens. 

![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/2026/08/data-src-image-6c3a5db6-4e3c-43b7-a2e3-7f13f6de1079.png)

Here's what you can do: 

**Log any symptom or side effect.** You can track any condition, symptom, or side effect that is relevant for you. There's no preset list you're restricted to, so you can add and remove symptoms whenever you need to.

**Record severity.** Each entry lets you note how severe the symptom was, on a scale you define. 

![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/2026/08/data-src-image-1b4a74c7-6746-4f74-ad73-8ba015fcfa89.png)

**Add notes.** Free-text notes let you add context that a severity rating can't capture: what you were doing when it happened, whether it correlated with a medication, whether it resolved on its own, etc.

**See patterns over time.** Novellia's simple flow helps you stay on top of symptoms and track your body's patterns over time so that you can be more aware of how to discuss treatment options with your doctor. The chart view will show trends across your logged entries, so you can see whether something is getting better, getting worse, or occurring in a pattern. 

![](https://storage.ghost.io/c/ab/dc/abdc6c5e-5917-4c06-94f2-c3672f9f3223/content/images/2026/08/image.png)

**Keep symptom logs alongside your medical records.** Novellia's symptom tracking is different from a notes app or a standalone diary because your symptom log lives in the same place as your labs, imaging reports, and clinical notes. That way, when you're preparing for an appointment, everything is already in one place. 

## **What you can do with your symptom log** 

**Bring it to appointments.** The most immediate use is the most straightforward: show up to your next appointment with a documented record of changes in how you’ve felt since your last visit. Pull it up on your phone and walk your doctor through it. This works especially well for conditions where symptoms fluctuate and are hard to describe from memory. 

**Identify patterns you wouldn't otherwise notice.** Some patterns only become visible over weeks or months. A symptom that feels random in the moment may correlate clearly with a medication cycle, a particular activity, or a time of day when you look at it across many entries. 

**Track treatment response.** If you start a new medication or treatment, your symptom log can become a before-and-after record. That's useful both for your own understanding and for your care team's decision-making. 

## **Frequently asked questions about symptom tracking** 

**Can I track more than one symptom at a time?** 

Yes. You can log as many symptoms, side effects, or conditions as you need. Most patients track several at once, especially when managing a chronic condition or going through treatment. Each symptom gets its own log, so you can view patterns for each one separately. 

**Do I have to log every day?**

No, you can decide how to use symptom tracking! Most people log only when something happens. If you have a good week with nothing notable, you don't need to enter anything. The log is most useful when it captures real events, not forced daily check-ins. That said, consistency over time, even if sporadic, gives you more to work with than a single entry before an appointment. 

**Can my doctor see my symptom log?** 

Not automatically. Your symptom log stays in your Novellia account and is only visible to you unless you choose to share it. You can bring it up at an appointment by pulling up your Novellia account on your phone, or you can share specific information directly with your care team. 

**Can I track medication side effects specifically?** 

Yes. When logging a symptom or side effect, you can add a note connecting it to a medication if relevant. This makes it easier to spot correlations between what you're taking and how you're feeling, which is useful both for your own awareness and for conversations with your prescriber. 

**Is symptom tracking available on mobile?** 

Yes. Novellia's symptom tracking is available on both the web platform and the mobile app, which is available for iOS and Android. The Quick Log feature on mobile is designed to make logging as fast as possible. 

**What if I want to share my symptom history with a new provider?** 

You can access your symptom log from any device where you're logged into Novellia. At an appointment, open your account and walk your provider through it directly. You can take notes or screenshots of your chart if that's helpful. 

**Is my symptom data private?** 

Your symptom log is part of your personal Novellia account and is protected under the same privacy standards as the rest of your health data. If you choose to join a research study through Novellia, that data is de-identified before it's ever shared with researchers, meaning it cannot be traced back to you. 

Ready to start logging? Sign in to your Novellia account and find symptom tracking in the app.

**About Novellia: Novellia is a free patient health platform that helps people consolidate their medical records, track symptoms and medications, and participate in research that's relevant to their diagnosis. Patients stay in control of their data at every step.**
### HER2-Ultralow Breast Cancer: A New Breast Cancer Classification Could Change Your Treatment Options
URL: https://blog.novellia.com/a-new-breast-cancer-classification-could-change-your-treatment-options/
Last updated: 2026-10-06T00:13:20.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: July 20, 2026

If you have a breast cancer diagnosis, there's a recently identified category that may make you eligible for a new therapy that may be the right option for you. **Keep reading to find out if this drug could work for your specific type of breast cancer.**

Breast cancer research moves fast. That means new treatments are emerging and researchers are getting better at matching the right therapy to the right patient. But it also means that what your oncologist told you two years ago might not reflect what's possible today. 

One of the most significant recent developments is a new breast cancer subtype called **HER2-ultralow**. If you have a breast cancer diagnosis, especially if you've been told your cancer is "HER2-negative," this is worth knowing about. 

## **What is HER2?** 

HER2 stands for Human Epidermal growth factor Receptor 2\. HER2 is a protein on the surface of cells. In healthy tissue, it helps cells grow and divide normally. In some breast cancers, the gene that produces HER2 goes haywire and the cancer cells make too much of it. When overproduction of HER2 happens, those cells tend to grow more aggressively. 

When doctors say a cancer is "HER2-positive," they mean that the tumor has an unusually high amount of this protein. 

For a long time, the classification was simple: you were either HER2-positive or you weren't. However that spectrum has started to change, impacting therapies available to patients. 

## **The HER2 spectrum: from positive to negative, and everything in between** 

Pathologists measure HER2 expression using a scoring system that runs from 0 to 3+: 

• **3+ (HER2-positive):** High HER2 expression. Standard HER2-targeted therapies apply. 

• **2+ (amplified):** Also considered HER2-positive after additional testing confirms amplification. 

• **2+ (not amplified) and 1+:** Until recently, these patients were grouped with HER2-negative and weren’t offered HER2-targeted therapies. 

• **0:** No detectable HER2 expression. 

A few years ago, researchers recognized a meaningful difference between patients who scored 1+ or 2+ (non-amplified) and those who scored a true 0\. They gave the 1+ and 2+ group a new name: **HER2-low**. 

Then researchers looked even closer and found something else. Some patients scored as HER2 0 had faint but detectable HER2 expression that wasn't quite 1+, but wasn't nothing either - it was **0+.**

This is the group now called HER2-ultralow.

## **Why does HER2-ultralow matter? The *Enhertu* connection.** 

A drug called **Enhertu** (scientific name: fam-trastuzumab deruxtecan-nxki, or T-DXd) has shown strong effectiveness in treating certain breast cancers. It's an antibody-drug conjugate (ADC), which means it's a targeted therapy that delivers chemotherapy directly to cancer cells that express HER2, while leaving healthy cells alone. 

Enhertu was initially approved by the FDA for HER2-positive patients. Then trials (Destiny-Breast) showed it also worked in HER2-low patients. That was a significant expansion – a large group of patients who had previously been excluded became eligible. 

Now,we have clinical trial data that shows that Enhertu is a valuable therapy in HER2-ultralow patients. 

## **How something called “real-world evidence” can be important to advancing our understanding of HER2-ultralow breast cancer** 

HER2-ultralow is a relatively new way of classifying breast cancer, one that didn't really exist as a distinct category until recent years. Patients with very low levels of HER2 protein expression were previously grouped in with "HER2-negative" patients, even though we now know that distinction matters for treatment response. Enhertu's approval for this group was based on clinical trials, but real life looks different. 

Patients vary in age, other health conditions, prior treatments, and everyday circumstances in ways no single trial can fully capture. Because HER2-ultralow is such a newly defined category, there's especially limited real-world evidence on how Enhertu performs once it moves from the trial setting into everyday practice, evidence that can only come from the patients actually living this diagnosis.

That's the role of a patient registry: gathering real-world experiences directly from patients so researchers can build a fuller picture over time. For HER2-ultralow specifically, that means researchers can:

- See whether Enhertu performs as well in everyday practice as it did in clinical trials
- Understand how it affects a broader range of patients than any single trial could include
- Learn more about the side effects and day-to-day experiences patients actually have

The patients who stand to benefit most from this research are the same ones who can help create it. That includes you, if you have or have had a breast cancer diagnosis.

## **"How do I know if I'm HER2-ultralow?"** 

You might not know yet, and your health portal might not say it explicitly. The term "HER2-ultralow" is recent enough that many older reports don't use it. You might have a score of 0 on paper. But whether that's a true zero or a faint positive that qualifies as ultralow depends on the specifics of how the test was read. 

If you want to find out where you stand, here's what to do: 

1\. **Locate your pathology report.** You have a legal right to request it from the hospital or lab where your biopsy or surgery was performed. 

2\. **Look for your HER2 score.** It will typically be listed as 0, 1+, 2+, or 3+, sometimes with a note about whether amplification was detected. 

3\. **Ask your oncologist about HER2-ultralow.** If you scored 0, ask specifically whether your result might qualify as ultralow under the newer criteria. 

## **Questions to bring to your next oncology appointment** 

• "Was my HER2 score a true zero, or could it fall into the ultralow range?" 

• "Has my pathology been re-reviewed against the newer HER2-ultralow criteria?"

• "Are there registries or studies I should know about for my specific subtype?" 

•"Is Enhertu something I should be asking about at this stage?" 

## **Why this is worth your attention** 

If you've been told HER2-targeted therapies aren't an option for you, HER2-ultralow is a classification that could change what's available. 

This is one of the reasons the HER2UL registry matters. Participating often involves sharing your pathology report and other records, which lets researchers review your HER2 score against the new classification criteria, and better understand which therapies are available to patients. 

**About Novellia: Novellia is a patient health platform that helps people consolidate their medical records, understand their health data, and participate in research studies on their own terms. Patients stay in control of their data at every step.**

**Sources**

[https://www.nejm.org/doi/full/10.1056/NEJMoa2203690](https://www.nejm.org/doi/full/10.1056/NEJMoa2203690?ref=blog.novellia.com)

[https://pmc.ncbi.nlm.nih.gov/articles/PMC10454084/](https://pmc.ncbi.nlm.nih.gov/articles/PMC10454084/?ref=blog.novellia.com)
### What Is a Patient Registry, and Why Should You Join One?
URL: https://blog.novellia.com/what-is-a-patient-registry-and-why-should-you-join-one/
Last updated: 2026-10-06T00:09:09.000Z
By: Katie Wu, Emily Noronha, Claire Baum, Cait Williamson PhD

Posted: July 20, 2026

We know that living with a diagnosis, navigating specialists, and managing your care is hard. Sharing your experience could improve future outcomes for patients like you. 

If you've ever been approached about joining a "patient registry," you've probably had one of two reactions: curiosity, or a thinking that clinical research sounds serious. Like something that happens in a lab, not something you sign up for from your phone. 

But patient registries aren't clinical trials. They're simpler and more accessible than most people expect. And if you're managing a chronic illness, a cancer diagnosis, or a rare disease, joining one might be one of the most meaningful things you can do. 

## **What is a patient registry?** 

A patient registry is a database of real patients who have agreed to share information about their health, their diagnosis, and their treatment history. This data helps researchers understand how treatments are working in the real world, with the goal of getting better care to patients faster.

That's it. No experimental drugs. No hospital stays. No randomized anything. 

Registries exist because the healthcare system is bad at tracking what actually happens to patients in the real world. Clinical trials test whether a drug works under controlled conditions amongst a patient sample. But they can't tell researchers what happens to diverse patients over years: what side effects actually emerge, which treatments work best for which people, or whether a drug approved for one group might help another. 

That's what registries do. They capture **real-world evidence** from **real patients**. According to the NIH's National Library of Medicine, patient registries are one of the most important tools for understanding how diseases progress and how treatments perform outside of controlled trial settings. 

## **How is a patient registry different from a clinical trial?**

|                 | Patient Registry                                                                                        | Clinical Trial                                            |
| --------------- | ------------------------------------------------------------------------------------------------------- | --------------------------------------------------------- |
| What you do     | Share health records and/or answer surveys                                                              | Receive an investigational treatment                      |
| Time commitment | Minimal, one-time connection, sometimes inclusive of periodic check-in surveys                          | Usually involves regular clinic visits, tests, procedures |
| Who runs it     | Academic researchers, pharmaceutical companies, patient advocacy organizations, platforms like Novellia | Academic medical centers or pharmaceutical companies      |
| Can you leave?  | Yes, at any time                                                                                        | Yes, at any time                                          |

The core difference: in a clinical trial, you help researchers learn whether a new treatment works. In a patient registry, you help researchers learn how treatments are already working in real life, just by sharing your experience.

## **What does joining a registry actually involve?** 

Every registry is a little different, but most follow a similar pattern: 

**1\. Confirm your eligibility.** Most registries are looking for patients with a specific diagnosis, biomarker, or treatment history. You'll answer a few screening questions to make sure the registry fits your situation. 

**2\. Share your health records or complete a survey.** Some registries ask you to upload medical records like pathology reports, lab results, or imaging. Others ask you to fill out a questionnaire about your symptoms, treatment history, or quality of life. Many do both. 

**3\. Consent to how your data will be used.** Before anything is shared, you'll review and sign a consent form explaining what data is being collected, who has access to it, and what it will be used for. You have the right to ask questions, and you have the right to say no. 

**4\. You're done, unless there's follow-up.** Some registries check in periodically, every 6 or 12 months. Others are a one-time contribution. You'll know exactly what to expect upfront. 

## **Is my data actually private?**

Reputable patient registries are required to follow strict data privacy laws, including HIPAA in the United States. Your data is *de-identified,* meaning your name, address, and other identifying information are separated from your medical information before researchers ever see it. 

## **What do you get out of it?** 

This varies by study, and it's worth asking upfront. 

**Access to your health data, consolidated.** Many registries, including those on Novellia, give you a cleaner, more organized view of your medical history in exchange for participating. That's useful regardless of the research. 

**Compensation for your time.** Many registries offer compensation: gift cards, cash payments, or other incentives. Researchers recognize that your time has value. 

**A direct role in advancing research for your condition.** If you have a rare disease or an underrepresented diagnosis, research moves slowly often because there isn't enough patient data. Your participation changes that directly as researchers use registry data to identify new treatment candidates, expand drug eligibility criteria, and design better clinical trials. 

**Early awareness of new options.** Participating in a registry often means you contribute to an understanding of new treatments. For example, patients participating in Novellia's HER2UL registry are contributing to research on Enhertu, a treatment already approved for HER2 ultra-low breast cancer. The study looks at how many eligible patients are actually receiving this treatment in the real world and how it's impacting their care, insights that can improve patient outcomes in the future.

## **How do you find a registry that's right for you?** 

Start with your condition. Novellia, like most companies, hosts registries across a range of diagnoses, including chronic and rare diseases, and adds new studies regularly. The best registry for you is one that matches your specific diagnosis and treatment history, not just a general category. 

You can also ask your doctor if they know of registries for your condition. Patient advocacy organizations often maintain lists of active studies. ClinicalTrials.gov lists both clinical trials and observational studies. Search by condition and filter for "observational" or "registry" study types as a starting point. 

## **The bottom line** 

Joining a patient registry means saying: my experience matters, and I want it to count for something. 

It requires you to share what you already know about your own health. In exchange, it puts that knowledge to work in research that could change outcomes for people diagnosed after you. 

That's not a small thing. 

Ready to find a registry that matches your diagnosis? Browse active studies on Novellia and see if you qualify. 

**About Novellia: Novellia is a patient health platform that helps people consolidate their medical records, understand their health data, and participate in research studies on their own terms. Patients stay in control of their data at every step.**