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Recurrent Pregnancy Loss Association Awareness. Advocacy. Answers.
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Your Participation Matters
RPL Community Registry Overview
The RPL Community Registry is a secure, online and mobile study for individuals who have experienced two or more pregnancy losses. By joining the study and sharing your experiences, you contribute directly to research, helping to advance understanding of RPL, improve care, and guide the development of treatments that could prevent future loss.
The RPL Community Registry is managed by RPLA and hosted on their IAMRARE® platform, powered by the National Organization for Rare Disorders (NORD®)
Answers Take All of Us
We envision a future where recurrent pregnancy loss (RPL) is eliminated, and individuals are empowered to make informed healthcare and family building decisions.
All Stories Matter. All Losses Count.
Why Join?
Your participation supports not only your own health, but the health of many others who have experienced or will experience multiple pregnancy losses. By joining, you are helping to build a community-powered tool that can:
- Find patterns. Help researchers better understand who is affected by RPL, potential contributing factors, and how medical histories, testing, treatments, and outcomes may be connected.
- Improve diagnosis and care. Learn how RPL is evaluated and treated across different providers and healthcare systems, identify gaps and variations in care, and generate evidence that can inform future clinical guidelines and best practices.
- Understand the full impact of RPL. Build knowledge about not only pregnancy outcomes, but also the physical, emotional, and financial effects of recurrent loss over time.
- Identify disparities and barriers to care. Better understand how factors such as geography, access to specialists, insurance, and other barriers may influence the care people receive and their outcomes.
- Accelerate future research. Create a trusted resource that researchers can use to develop new studies, investigate important questions, and identify potential participants for approved research studies and clinical trials.
- Make patient experiences count. Ensure that people who have experienced RPL have a meaningful role in advancing research and shaping the questions that researchers ask.
You may never meet the people who benefit from what researchers learn through the Registry. But by adding your experience to thousands of others, you can help build the evidence needed to understand RPL and help create a future where fewer families are left without answers.
You can also choose to be contacted about future research studies and clinical trials for which you may be eligible.
Who Can Join?
You can participate in the RPL Community Registry if you:
- Are an adult 18 years or older
- Have experienced two or more pregnancy losses
All types of pregnancy losses count, including early pregnancy losses or biochemical pregnancies, ectopic or partial or complete molar pregnancies, terminations for medical reasons, and later-term losses or stillbirths.
All stories matter. You can participate in the registry even if your losses were a long time ago. Your experience may help those still trying to grow their family. It may also give valuable insight into how RPL is related to other, longer-term health conditions.
"Alone we can do so little. Together we can do so much."
- Hellen Keller
Participation is Simple and Free
Joining the RPL Community Registry is easy! Either:
- Visit the RPL Community Registry study page and register yourself on the IAMRARE® platform.
- Download the IAMRARE® mobile app (available from the Apple Store or Google Play) and complete the registration via the app.
Once your registration is complete and your email has been validated, you can create your participant profile within the RPL Community Registry and start completing health surveys!
This User Guide walks you through the entire process, step-by-step.
What to Expect:
- Time commitment: Most surveys take less than 10 minutes to complete, though some make take more or less time. You can complete them at your own pace and return later if needed.
- Data collection: Surveys are completed online or through the IAMRARE® mobile app. They are based on your personal experience and memory, you do not need to request medical records or contact your healthcare provider.
- Privacy and security: Your information is stored securely on encrypted servers and shared only with approved researchers under strict confidentiality agreements.
RPL Community Registry Partners
Frequently Asked Questions
Please reach us at info@rplassociation.org if you cannot find an answer to your question.
The RPL Community Registry was created to improve understanding, care, and treatment for people affected by recurrent pregnancy loss (RPL). By securely collecting information directly from people who have lived experienced with RPL, the registry aims to:
- Better characterize the population affected by RPL, including medical history, diagnostic testing, and treatment experiences
- Understand patterns in clinical care across different providers, health systems, and populations
- Learn more about the short- and long-term physical, emotional, and financial impact of RPL
- Examine how access to care influences treatment pathways and outcomes
- Support the development of evidence-based best practices and clinical care guidelines
- Serve as a resource to identify potential participants for IRB-approved research studies, including retrospective research and future clinical trials
- Provide the RPL community with an opportunity to meaningfully contribute to research, something many individuals find empowering and supportive of healing
- Maintain an optional contact registry so participants may be notified of future research studies or clinical trials
A patient registry (e.g. the RPL Community Registry) is a collection of standardized information about individuals who share a specific condition, in this case, recurrent pregnancy loss. Patient registries are used for research purposes such as understanding the progression or natural history of a condition, identifying unmet needs, and supporting clinical research and trial recruitment.
Information is collected directly from participants through secure web-based platforms and mobile applications, allowing individuals to contribute data in a consistent and convenient way. Patient registries center lived experiences and help ensure that patients have a voice in research, care, and treatment development.
A natural history study is a type of research designed to follow a condition over time. It includes individuals who have experienced a specific condition and, in some cases, those at risk of developing it. These studies help identify patterns related to symptoms, outcomes, genetics, environment, and treatment experiences.
Data from natural history studies may be used to improve care, inform best practices, and support future clinical research. Patient registries are commonly used to collect data for natural history studies.
Data are collected through the IAMRARE® registry platform, a secure web-based system and mobile application developed and maintained by the National Organization for Rare Disorders (NORD®). Participants may access IAMRARE® using a computer, tablet, smartphone, or mobile app.
Participants complete standardized and/or custom surveys about their lived experience of recurrent pregnancy loss. The surveys are developed according to research best practices and in collaboration with the RPL Community Registry Advisory Board as well as RPL clinical and scientific experts.
Information collected may include, but is not limited to:
- Demographic information
- Medical history and diagnostic testing
- Treatments and pregnancy outcomes
- Care management experiences
- Quality of life and overall impact of RPL
- Impact of RPL on physical, emotional, and/or financial health
- Lifestyle information about you and/or your partner
A research study sponsor is the organization responsible for overseeing and funding a research project. The sponsor ensures that qualified researchers conduct the study and that it is carried out ethically and in accordance with applicable regulations.
The sponsor of the RPL Community Registry is the Recurrent Pregnancy Loss Association (RPLA).
RPLA is a non-profit organization dedicated to eliminating recurrent pregnancy loss through the advancement of research into causes and treatments; to providing support and resources to those affected; and to increasing awareness of the impact of miscarriage and fertility challenges on individuals and families.
RPLA is run by a volunteer Board of Directors, many of whom have experienced recurrent pregnancy loss themself.
The Principal Investigator (PI) is the individual with overall responsibility for the design and conduct of the registry. The PI oversees registry staff and ensures the registry is conducted according to approved scientific and ethical standards.
A study participant is the individual whose information is included in the registry. Adults who choose to participate will provide informed consent and enter information about themselves.
The Informed Consent Form (ICF) provides important information about the RPL Community Registry so you can decide whether participation is right for you. It explains the purpose of the registry, potential risks and benefits, how your information will be used, and how privacy is protected.
Participation is voluntary and will not affect your medical care. Individuals who choose to participate must electronically sign the ICF before entering any information.
An Institutional Review Board (IRB), also known as an Ethics Committee (EC) or Research Ethics Board (REB) in Canada, is an independent group that reviews research involving people. Its primary role is to protect the rights, safety, and well-being of research participants.
The Registry Advisory Board (RAB) is a group that may include clinicians, researchers, and patient advocates. The board provides oversight and guidance for the registry, advises on survey development, and reviews requests to use registry data for research purposes.
The registry is open to individuals who:
- Are 18 years of age or older, and
- Have carried and lost two or more pregnancies
At this time, male or non-birthing partners are not eligible to participate.
For the purposes of the RPL Community Registry, all types of pregnancy loss are included. This means that any pregnancy loss you have experienced counts, including:
- Earlier pregnancy losses and biochemical pregnancies
- Ectopic pregnancies
- Molar pregnancies, or partial moles
- Terminations for medical reasons
- Later pregnancy losses and stillbirths
We recognize that pregnancy loss can occur in many different ways and at different stages, and that each loss matters. The registry is designed to reflect the full range of experiences within the recurrent pregnancy loss community.
You are still welcome to participate. It does not matter how long ago your pregnancy losses occurred.
One of the goals of the RPL Community Registry is to better understand the long-term physical, emotional, and life impact of recurrent pregnancy loss. Information from people at all life stages—and in all phases of family building or beyond—is important to this effort.
Whether your losses were recent or many years ago, your experience can help shape future research, care, and support for others.
No. There is no cost to join the registry.
No. Participants are not paid for contributing information.
The goal is to keep each survey brief and manageable. Most surveys are designed to take less than 10 minutes, though some may take more or less time to complete.
The surveys are based on your personal experience and memory. You do not need to contact your healthcare provider or request medical records to participate. You can complete surveys at your own pace and return later if needed.
Over time, you may be invited to complete additional short follow-up surveys to help keep the information current.
Registries hosted on the IAMRARE® platform are typically open for a minimum of five years. Participants may be asked periodically to return to the registry—through the web-based platform or mobile app—to update their information.
Yes. Participation is voluntary, and you may withdraw from the registry at any time. Information collected prior to withdrawal may continue to be used for research purposes. Information already shared with researchers cannot be retrieved or removed.
Yes. Because the registry is available through a secure web-based platform and mobile application, individuals may contribute data from anywhere in the world. However, individuals from other countries who enter data into the registry should be aware that data and privacy laws are different in the U.S. from other countries. This U.S. based registry will protect data and privacy according to U.S. requirements.
Participants outside the United States receive the same privacy protections as U.S. participants. Individuals living in the European Union or Switzerland have additional rights related to their personal data, which are described in the Informed Consent Form.
By signing the consent form, participants acknowledge and authorize the collection and use of their information. Privacy laws in other countries may differ from those in the United States.
Registry participants who are residents of the European Union and Switzerland are entitled to:
- Request to obtain access to and rectification or erasure of personal data;
- Receive personal data in a portable, readily-accessible format;
- Restrict or withdraw permission for the processing of personal information; and
- Lodge a complaint with an appropriate supervisory authority.
RPL Community Registry participant data is stored on NORD® encrypted servers and/or encrypted servers of third-party vendors hosted in Canada. Regular back-up at commercially acceptable intervals is provided. These servers meet industry standards and are compliant with US and international regulations, including GDPR.
The registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD® servers. The data is also kept encrypted in the NORD® database. Communications between the registry platform application server and the database are also encrypted. As with any information you provide electronically, there is a very rare chance that your privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.
Registry data are owned by the study sponsor, RPLA. RPLA determines how data may be shared for approved research purposes, as described in the Informed Consent Form. NORD® staff may access data for technical support and platform maintenance.
Access to protected health information is limited to:
- Approved members of the RPL Community Registry research team
- NORD® staff, when technical support is required and authorized
- Approved researchers conducting IRB-approved research
Researchers are provided only the minimum necessary data to complete their research and must agree to strict confidentiality requirements.
The registry is hosted on the IAMRARE® web-based platform and mobile application and is maintained by NORD®, which provides ongoing technical support and system maintenance. RPLA is responsible for the day-to-day management and oversight of the registry.
The RPL Community Registry is fully funded through donations made to the Recurrent Pregnancy Loss Association (RPLA).
The registry is hosted on the IAMRARE® platform, which is developed and maintained by the National Organization for Rare Disorders (NORD®). NORD® supports the IAMRARE® platform infrastructure, while RPLA is responsible for funding and overseeing the registry itself.
NORD®, an independent nonprofit, is leading the fight to improve the lives of rare disease patients and families. They do this by supporting the rare community, its people, and organizations. NORD® works together with Patient Advocacy Groups to accelerate research, raise awareness, provide valuable information, and drive public policy that benefits the estimated 25-30 million Americans impacted by rare diseases.
Learn more about NORD® at https://rarediseases.org/.
RPLA had launched a previous version of the RPL Community Registry on a platform called LunaDNA. The company closed in January 2023 and the LunaDNA platform was shut down.
RPLA was able to collect high-level, aggregated data from the platform. But unfortunately, due to the way data was stored within LunaDNA, RPLA was not about to re-identify participant data in order to transfer it to another platform.
Thus, the RPL Community Registry on IAMRARE® is a completely fresh start. RPLA spent months evaluating technology platforms and is confident IAMRARE® is the best home for the RPL community. NORD® has been working with the rare disease community for decades. They are truly committed to community-centered research and advocacy.
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