Recurrent pregnancy loss (RPL) can be emotionally, physically, and financially devastating, yet despite the magnitude of its impact, its causes are poorly understood. Up to half of all RPL cases remain medically unexplained even after all recommended evaluations.
The RPL Community Registry
AllPaths Family Building is proud to partner with the Recurrent Pregnancy Loss Association (RPLA) to help raise awareness of the RPL Community Registry. The RPL Community Registry is a community-led study that can help researchers understand causes of RPL, identify patterns in care, and ultimately inform future research into diagnosis, treatment, and care.
Recurrent pregnancy loss (RPL) affects thousands of families, yet too often individuals are left without clear answers or consistent support. The RPL Community Registry allows people who have experienced two or more pregnancy losses to contribute their experiences to research in a secure way. All losses count no matter the gestation or how long ago they occurred.
By participating, individuals can help ensure that community voices guide research priorities and future solutions. The registry is owned and operated by RPLA and hosted on the IAMRARE® platform through the National Organization for Rare Disorders (NORD®).
The RPL Community Registry will give families a powerful way to turn their personal experiences into collective knowledge that can advance meaningful research. If you or someone you care about has experienced recurrent pregnancy loss, we encourage you to learn more and consider joining.
Join the RPL Community Registry
RPL Community Registry FAQs
What is the purpose of the RPL Community Registry?
The RPL Community Registry was created to improve understanding, care, and treatment for people affected by recurrent pregnancy loss. 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
What is a Patient Registry?
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.
How is the data for the RPL Community Registry collected?
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.
What types of data will be collected in the RPL Community Registry?
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 the pregnant person and/or their partner
Who can join the RPL Community Registry?
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.
What counts as a pregnancy loss?
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.
How much time will it take?
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 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.
Who owns the data?
Registry data are owned by 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.