Click on the sign-up link below to create an account with your email address.
Join the PPCM Registry in 4 easy steps
Step 1: Sign up
Step 2: Review consent
Learn about the study and how we protect your information. This takes about 5 minutes.
Step 3: Complete surveys
Answer questions about your diagnosis, treatment, and recovery. This takes about 15 minutes.
Step 4: Medical records
Securely share your medical records through the portal (10 minutes). This part of the study is optional.
What is a research registry?
A patient-directed research registry is a secure database where people who have experienced peripartum cardiomyopathy (PPCM) can voluntarily share information about their health, symptoms, and experiences. Unlike traditional medical research — which is often designed and led only by doctors — this registry puts patients at the center. You decide what to share, and your voice shapes what gets studied.
What happens when I sign up?
When you join, you'll be asked to complete surveys about your PPCM diagnosis, treatments, recovery, and quality of life. Your information is kept private and secure. Researchers will only ever see de-identified data — meaning nothing is ever linked back to you personally. You can update your information over time, and you can withdraw at any time.
Your voice matters
PPCM is a rare condition, which means researchers have very little data to work with. The more patients who join, the clearer the picture becomes — and the better the treatments, guidelines, and support that can be developed for future patients.
You can join the PPCM Registry if you:
- Are 18 years or older
- Live in the United States
- Have ever been told that you have peripartum cardiomyopathy
- Agree to create an account and answer survey questions
Frequently asked questions
Any information you share with us is protected under HIPAA rules and regulations. Data is used only for research. Your participation is voluntary, and you can withdraw at any time. Click here to read our privacy policy.
How can we tell if a woman will have full recovery of her heart function?
How long should women with PPCM continue heart medications?
What can we do to prevent complications if a woman with PPCM has another pregnancy?
