Join the COMPASS Study for MMA & PA Research | PicnicHealth

Join the COMPASS Study

Help advance research in methylmalonic acidemia (MMA) due to mutase deficiency (MUT) and propionic acidemia (PA) right from home. Your experience can help researchers better understand these rare conditions—and potentially improve treatment and support for other families.

Participate from home using a mobile or web-connected device
No extra labs, procedures, or study visits
We collect your or your loved one’s medical records for you
Complete short surveys every four months
Receive $250 for your time

Get Started

Who is eligible to participate?

A study grounded in real-world experiences

This observational study is designed to better understand the impact of MMA and PA on families. By collecting medical records and brief survey responses, researchers can understand how the condition is managed, how symptoms evolve, and where support is most needed.

Moderna is sponsoring this study to better understand the real-world experiences of families affected by MMA and PA. Your experience helps inform efforts to potentially develop future treatments and improve care.

PicnicHealth is partnering with PicnicHealth to collect, digitize, and de-identify your or your loved one’s medical records. You have the opportunity to participate in MMA and PA research while staying in control of your data.

What to Expect

Here’s what to expect when you take part in the study:

Medical Record Collection

We’ll securely collect your or your loved one’s medical records to understand their care and confirm eligibility.

Short Surveys

If eligible, you’ll be asked to complete short surveys (approximately 30-minutes long) every four months to help track your or your loved one’s daily activities and overall quality of life.

Support MMA and PA Research

By joining, you’ll help researchers learn how these conditions affect families—and guide future treatments and care strategies.

You’ll get a PicnicHealth account and access to your or your loved one’s medical history

By participating in the COMPASS Study, you’ll get access to any of the records we collect. Your or your loved one’s medical records are yours to keep, forever.

PicnicHealth Account Benefits

Tools and visualizations

Zoom in on what’s most important and track trends over time.

Care management toolkit

Keep track of active medications and health concerns and receive clinical support.

Easy sharing

New doctor? Share your or your loved one’s records to get the care you need without wasting time.

Contribute to a deeper understanding of MMA and PA

How It Works

Sign up in minutes

To sign up, you will be asked to sign an Informed Consent form (ICF) which gives you information about the study. After reviewing and signing the ICF, simply confirm your or your loved one’s MMA or PA diagnosis and provide the names of your healthcare providers. With your consent, PicnicHealth will gather your health history into a secure, regularly updated digital portal that only you can access.

We’ll gather your records

PicnicHealth will do all the work to gather your or your loved one’s medical records once you sign up. With instant, secure connections to thousands of healthcare institutions, we’re usually able to find most of your records in minutes, and we’ll organize everything into an easy-to-use dashboard. We’ll continue to collect new records for the duration of the study. Any records collected are yours to keep forever, to use and share as you please.

Complete short surveys in your dashboard

If you qualify, you’ll be invited to complete short online surveys that are 5-10 minutes each (about 30 minutes total) every four months. These surveys will appear directly in your PicnicHealth research dashboard, making it easy to track and respond at your convenience. Your responses help researchers better understand daily life with MMA or PA, including health, care, and quality of life.

The COMPASS Study combines and analyzes medical records

As part of this study, the COMPASS team may review your or your loved one’s information together with data from other participants to help us better understand how MMA or PA affects everyday life.

To protect your privacy, any personally identifying information is removed through a process called de-identification. This ensures researchers only see the essential health information. When we combine information from many participants, we can start to see bigger patterns and insights that help researchers better understand MMA MUT and PA.

Ready to get started?

FAQs

Who can sign up for the COMPASS Study?

You may be able to enroll if:

If you’ve lost a loved one to MMA or PA, you may still be able to participate by contributing their medical records.

How is PicnicHealth part of the COMPASS Study?

Moderna has partnered with PicnicHealth to help researchers learn more about how MMA MUT and PA affect children and adults in the real world. When you enroll in the study, PicnicHealth handles everything related to collecting, digitizing, and organizing your or your loved one’s medical records—no extra work is needed from you.

Can I change my mind?

Yes, you can withdraw your consent at any time. When you withdraw your consent, PicnicHealth will stop collecting records for you or your loved one. However, any data that has already been shared with COMPASS researchers, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.

How does PicnicHealth protect my privacy?

PicnicHealth follows HIPAA-compliant practices and uses advanced end-to-end encryption and security measures, the same technology banks use to keep information secure. Your records are only shared with your permission.