Together We Can Change the Story
"Unexplained" is Unacceptable
We envision a future where recurrent pregnancy loss (RPL) is eliminated and individuals are empowered to make informed healthcare and family building decisions.
The RPL Community Registry supports this by:
- Providing anonymized data for doctors and scientists conducting research into the causes of, and treatments for, recurrent miscarriage
- Connecting interested patients with relevant research studies, while protecting their privacy.
- Educating families, healthcare providers, and others about RPL.
Data from the RPL Community Registry may generate new hypotheses to test, improve care practices, or get us closer to understanding why recurrent pregnancy loss happens and how it can be prevented.
Your participation supports not only your own health, but the health of many others who have experienced or will experience multiple pregnancy losses.
Participation is Simple and Free
1. Join the RPL Community Registry on LunaDNA
Use our personal registration link to create a profile on the LunaDNA platform and complete the two-factor authentication process.
The RPL Community Registry is open to individuals 18 or older who have carried and lost two or more pregnancies. Residents of countries outside the United States may be able to join based on their national privacy regulations.
2. Start Taking Available Surveys
Any studies (surveys) you are eligible for will show up on your LunaDNA home page. You can complete them all at once or over time as you have availability. You can also choose to participate in some surveys and not others. It's always up to you!
3. Check Regularly for Emails from LunaDNA
Because your information is private, RPLA will never contact you directly about the registry. Researchers and other collaborators will also be unable to contact you directly. All communication will come through the LunaDNA portal, where you can configure your notification preferences. We will use this to let you know about new surveys or research opportunities and to share the results of studies you've participated in.
Your Privacy is Important
You Are Always in Charge of Your Data
RPLA understands that your health information is private. The RPL Community Registry is completely confidential. You own your data every step of the way and can delete it at any time.
The registry is hosted on LunaDNA. LunaDNA is HIPAA (Health Insurance Portability and Accountability Act) and GDPR (General Data Protection Regulation ) compliant, following both U.S. and E.U. privacy regulations. The LunaDNA platform allows you to answer questionnaires with state-of-the-art privacy and security. RPLA and researchers will never see your name, email or other personal identifying information. All of our communication with you related to the RPL Community Registry is through the LunaDNA platform.
Moreover, you can view, download or delete your profile at any time, and your data cannot be shared outside of the platform without your permission. That means that your data is in your hands every step of the way.
Registry Partners
