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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:
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.
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.
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!
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.
Sign up takes less than 5 minutes. We promise.
Watch our founder complete the process in the video below.
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.
The goal of the registry is to understand the characteristics of recurrent pregnancy loss to enable investigations into the causes and treatments of multiple miscarriage.
Currently, we are enrolling individuals who have themselves carried and lost multiple pregnancies. However, we may deploy surveys within the system to ask questions about those individuals' partners.
Our goal is to keep every survey below 10 minutes (some will take less time than others). All initial surveys will be based on your memory of your experience. You won't need to reach out to your doctor or request medical records.
The registry is fully funded by donations made to Recurrent Pregnancy Loss Association (RPLA). We have worked with Genetic Alliance, a 501c3 nonprofit organization, to guide us in the process of structuring our registry.
All data is stored within the LunaDNA platform which complies with U.S. and E.U. privacy regulations and implements the latest data security protocols. Click HERE to learn more.
Analysis of pooled survey data occurs within the LunaDNA system. All personal information is removed before analysis occurs. Your data is never sold, and it cannot leave the system unless you allow it.
Copyright © 2022 Recurrent Pregnancy Loss Association - All Rights Reserved.
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