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
Who is eligible to participate?
- Adults or children with a physician confirmed diagnosis of methylmalonic acidemia (MMA) due to mutase deficiency (MUT) or propionic acidemia (PA), born after January 1, 2005
- Patients and/or caregivers who reside and receive care in the US
- Additional eligibility requirements may apply
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.
Moderna 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
Short Surveys
Support MMA and PA Research
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
Sign UpHow 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.
Sign Up
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
You may be able to enroll if:
- You or your loved one has a physician confirmed diagnosis of methylmalonic acidemia (MMA) due to mutase deficiency (MUT) or propionic acidemia (PA)
- You reside or receive care in the United States
- You are able to give informed consent and complete brief online surveys
- Born after January 1, 2005
If you’ve lost a loved one to MMA or PA, you may still be able to participate by contributing their medical records.
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.
You’ll receive access to a secure online account where you can view and manage your or your loved one’s organized records. To protect your or your loved one’s privacy, identifying information like name and birthdate is removed, and their records are assigned a unique study ID (de-identified) before being shared with Moderna researchers.
This real-world data helps researchers better understand patterns of care, symptoms, and long-term health outcomes—so they can improve support for families like yours.
Moderna is the research sponsor of the COMPASS Study. Moderna has engaged PicnicHealth, a digital health company, to help securely collect and manage study participants’ medical records for the purpose of this study.
No. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. The COMPASS Study is different - it’s an observational study meaning researchers are not testing new treatments or asking you to change your or your loved one’s care. Instead, they learn from information already in your or your loved one’s medical records and, if you are eligible, from short online surveys. There are no extra labs, tests, or doctor visits required to take part.
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.
PicnicHealth is a digital health company helping families access and organize medical records. For the COMPASS Study, PicnicHealth collects and manages de-identified records on behalf of enrolled children and adults with MMA MUT or PA to support real-world research.
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.
PicnicHealth will never share your or your loved one’s records without your explicit consent. By signing up for this study, you're agreeing to share your de-identified data with the COMPASS research team. You will be the only person who can access your or your loved one’s medical records on PicnicHealth. No one — including your doctor or insurance company — will be able to see your or your loved one’s medical records unless you choose to share them by clicking "Send Records" at the top of the PicnicHealth timeline.
We’ll start by searching for any of your records through our connected network. If necessary, direct requests can also be sent to your healthcare providers. Electronic records can be available within an hour, while records from individual providers may take a couple weeks.
For more details or assistance regarding the PicnicHealth platform and medical record services, visit our website or reach out to the PicnicHealth team at compass@picnichealth.com.
“With PicnicHealth, I was able to eliminate the tedious work and stress of managing my records allowing me to focus on my care and living!”
PicnicHealth Research Participant
