Empower yourself and other IgAN patients by contributing to research

When you contribute your de-identified medical records to IgAN research, you join thousands of other patients who have empowered themselves and their community by sharing their journey.

If you’re eligible, you'll receive $100 for your time and participation.

See if you're eligible
Eligibility: This study is open to those who have a confirmed IgAN diagnosis and have received medical care in the U.S.
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Why join?

Get your records, give to science

Your health in your hands.

Access all of your medical records directly from your PicnicHealth account. Just go to your appointments, and we do the rest.

  • View doctors’ notes, test results, medications, imaging, and more.
  • Search your records by visit date, doctor, location, or keyword.
  • We’ll update you when we add new records.

Share records seamlessly.

Coordinate your healthcare with a click. PicnicHealth makes it easy to share records with a new specialist, or just keep your family in the loop.

  • Share records directly via email, text message, or link.
  • Set custom security measures to share your records securely.
  • Pause or remove access any time.

Accelerate research from home.

Contributing to research has never been easier. Earn rewards for sharing your records with researchers, answering questions about your health, and referring friends.

  • Share your anonymized records with IgAN researchers.
  • Earn rewards for completing surveys about your health.
  • Refer members of your community to participate.
Want to know more about what it means to contribute to research through PicnicHealth?

How PicnicHealth Works

Join For Free
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Sign up for PicnicHealth in less than ten minutes

Just answer a few questions about yourself and let us know who your doctors are. As soon as you finish signing up, we’ll start connecting you with your medical records.

Change Champions

Meet Other IgAN Patients Who Have Empowered Themselves Through PicnicHealth

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Your medical history,
your control

We securely store your data, but you're in charge. We know this is your most private information, so it's entirely up to you if and when you want to give access to anyone else. Whether that's a doctor or a research study, our job is to make sure your records are fully under your control.

Change Champions

Meet Other IgAN Patients Who Have Empowered Themselves Through PicnicHealth

Access records via mobile

Unlock your health journey
with PicnicHealth

  • Use your timeline for care management
  • Connect with your IgAN community
  • Learn how your research participation is making an impact
Change Champions

Meet Other IgAN Patients Who Have Empowered Themselves Through PicnicHealth

Frequently Asked Questions

What does PicnicHealth do?

PicnicHealth collects, digitizes, and secures your medical records—then arranges everything in one intuitive timeline. No need to worry about a note from your doctor or the results from a lab. It’s all there for easy reference, right when you need it. We handle all the hard work of phone calls and faxes to request and collect your records from your doctors.

PicnicHealth also partners with some of the world’s leading researchers to find new breakthroughs in healthcare. By opting into relevant research, you can join forces with thousands of others who are helping advance science. By examining de-identified medical data from large groups of people, researchers can spot trends, understand patient journeys and find out how effective different treatments are in real life.

Study Basics
What is the purpose of PicnicHealth studies?

Our goal is to power the next wave of breakthroughs in treating challenging diseases. Medical records document what living with the disease is really like and how treatment options work in the real world, all without needing to enroll people in large, invasive clinical trials. When combined with other patient records, we can begin to understand what diagnosis, care, and progression look like for populations like never before.

Study Basics
Can my medical records really help with research?

Medical records tell a story of what’s actually happening when doctors see patients and can be really helpful for understanding how care is delivered in the real world. They also contain a lot of information about how you experience disease—your symptoms, health status, and treatments. Putting all of this information together for a diverse group of people will allow the scientific community to see patterns that no one doctor can see on his or her own.

Study Basics
How can PicnicHealth make my records de-identified for research?

Our process is fairly sophisticated. We don’t just redact your records by crossing out or deleting your name. When preparing records to share with researchers, we actually extract specific pieces of information from your records—like lab results or medications—and put those into a separate file. Then we combine those with similar information from other de-identified patient records. So the actual file researchers receive is primarily a spreadsheet with a bunch of numbers, drug names, and dates. This is the most useful format for their research, and it also does a much better job of protecting patient privacy than sharing full medical records. Most of our research includes hundreds or thousands of patients, ensuring that this collective information is totally de-identified.

Study Basics
Will my medical records be secure?

Thousands of people use PicnicHealth to track their health histories, so we take privacy very seriously. We’ll never share your data without your permission. We’re HIPAA compliant and use end-to-end encryption, the same technology banks use to keep your information secure.

Study Basics
Can I see what my records will look like in my PicnicHealth account?

Yes! You can view a sample account here. We call it your PicnicHealth Timeline because you can see your care journey from start to finish, with all your visits from all your doctors in chronological order.

Study Basics
What is IgA nephropathy?

IgA nephropathy, also known simply as IgAN, is a kidney disorder. It happens when a type of protein called Immunoglobulin A (IgA) builds up in your kidneys. This buildup can cause inflammation and damage to your kidney’s filters, known as glomeruli. Over time, this can potentially lead to kidney failure.

Study Basics
What causes IgA nephropathy?

The exact cause of IgA nephropathy is still unknown. Researchers are actively investigating why some people accumulate IgA deposits in their kidneys.

Study Basics
Is IgA nephropathy life threatening?

IgA nephropathy can become life-threatening if it progresses to more advanced stages of kidney disease. However, with proper management and treatment, many people live with the condition for years without progressing to severe stages.

Study Basics
What treatments are available for IgA nephropathy?

As of 2023, there are two FDA-approved treatments specifically for IgA nephropathy: Filspari and Tarpeyo. Additional treatment options include corticosteroids, drugs that suppress the immune system (immunosuppressants), and medications that help control blood pressure and protect your kidneys (ACE/ARB inhibitors).

Study Basics

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