DISCOVER-ATTR National Study
A national, patient-powered registry advancing research in ATTR-CM.
Help advance ATTR-CM research from home
DISCOVER-ATTR is a national, remote research registry for adults with transthyretin amyloid cardiomyopathy, also called ATTR-CM.
The registry helps researchers learn from information shared by people living with ATTR-CM across the United States.
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Step 1
Provide Consent
Review study details and complete the electronic consent form, if interested.
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Step 2
Complete Questionnaire
Answer questions about where you receive health care, your experience with ATTR-CM and which mobile devices you use.
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Step 3
Secure Sign-In
Use the app or web browser to securely sign into the study platform using the email and password you choose during account creation.
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Step 4
Data sharing
Complete paid data-sharing activities.
Note: Available data-sharing activities may vary based on your patient portal, device, and ability to use the DISCOVER app.
- Share your medical records by securely connecting to your healthcare system
- Share data from your iPhone or Apple Watch by securely connecting your device (in app only)
Why is this needed?
ATTR-CM can be difficult to recognize, and many people may live with the condition before it is identified. Researchers need a more complete picture of ATTR-CM — including information from medical records, patient experiences, and everyday activity — to better understand the condition and the people it affects.
By bringing these unique pieces of data together, DISCOVER-ATTR aims to identify patterns that may support earlier recognition, diagnosis, and treatment in the future.
Who Can Join?
DISCOVER-ATTR is for people who:
- Live in the United States
- Are 18 years of age or older
- Have been diagnosed with ATTR-CM
- Can comfortably understand English
- Have internet access and an email account
Payments for data sharing
You may receive up to $50 total for completing data-sharing activities after enrollment.
Ready to learn more?
Start by clicking here and answering a few eligibility questions. If you are eligible, you will be directed to the consent form with more details before deciding whether to join.
Frequently asked questions
If your question is not answered below, please contact the study team at 475-224-9419 or cards.research@yale.edu.
What is the DISCOVER-ATTR Registry?
DISCOVER-ATTR is a national, remote research registry for adults with transthyretin amyloid cardiomyopathy, also called ATTR-CM. The registry helps researchers learn from information shared by people with ATTR-CM across the United States.
Why is this needed?
Researchers need better real-world information to understand ATTR-CM and the people it affects. DISCOVER-ATTR brings together information from medical records, patient experiences, and everyday activity to help identify patterns that may support future research, earlier recognition, diagnosis, and treatment.
How can I participate?
You can get started by clicking here and answering a few eligibility questions. If you are eligible for the study and interested in participating, you will complete the electronic consent form.
Do I need to do anything in-person?
No. DISCOVER-ATTR is remote, and no in-person study visits are required.
What will I be asked to do?
If you are eligible, you will review more details about the study before deciding whether to join. If you choose to join, you will provide consent and complete an enrollment questionnaire.
After enrollment, you will sign in to the study platform via app or web browser and complete paid data-sharing activities, such as sharing electronic health record data and sharing data from your iPhone or Apple Watch.
How do I complete data-sharing activities?
After you complete the enrollment questionnaire, the study team will send detailed instructions about how to complete data-sharing activities.
What is a patient portal?
A patient portal is an online account, such as MyChart, that lets you view health information from your healthcare provider or health system.
What does DISCOVER-ATTR do with the data?
The study team uses the data collected from the registry for research to better understand ATTR-CM experiences, care, treatment, and outcomes. Study data may be combined with information from other participants and used in research reports, presentations, or publications.
How is my information protected?
The study team takes steps to protect your privacy and data. Study information is stored using secure systems, and access is limited to authorized study personnel.
Will I be paid?
You may receive up to $50 total for completing paid data-sharing activities after enrollment:
- $25 for successfully sharing electronic health record data
- $25 for successfully sharing iPhone or Apple Watch data
Are there costs to join the registry?
There are no costs to join the registry.
Will this study affect my medical care?
No. DISCOVER-ATTR is a research study. It does not provide medical care, diagnosis, or treatment. Your decision to join or not join will not affect your medical care.
Is this a clinical trial?
No. DISCOVER-ATTR is an observational research registry. It does not provide medication, treatment, diagnosis, or medical care.
Can I stop participating after I enroll?
Yes. Participation is voluntary. You can stop participating at any time.
Do I need a patient portal to join?
A patient portal is important because medical record data sharing is a key part of DISCOVER-ATTR. You do not need one to start the enrollment process, but you will need one to complete medical record data sharing. If you do not have a patient portal, you may be able to create one through your health system.
What if I do not have an iPhone or Apple Watch?
You do not need an iPhone or Apple Watch to participate in DISCOVER-ATTR. You can still complete other parts of the registry, including medical record data sharing. An iPhone or Apple Watch is only needed for the Apple device data-sharing activity.
Stay Involved
By joining DISCOVER-ATTR, you’ll receive updates from our study team about the registry, future research opportunities, and other ways to stay involved. You’ll also become part of a national community of people living with ATTR-CM, helping researchers better understand experiences, care, and outcomes across the United States.