After Megan Hanson and her husband Ben decided to start their family, they were elated to find out they were pregnant after only two months of trying. Unfortunately, Megan experienced a miscarriage. After processing their grief, they tried again. And again. After experiencing six miscarriages, Megan and Ben still had no answers as to why.
“We went through all the treatments. We saw all the specialists. We got all the procedures. We took all the drugs and still ended up losing every pregnancy,” Hanson said. “We were always able to successfully get pregnant, but we just were never able to stay that way. It was heartbreaking. And when we would sit down with our care team and ask if there was anything that could be done differently that would lead them to believe the next pregnancy would be any different. They weren’t able to offer anything in terms of protocols or treatment regimens or testing.”
Hanson started to talk to other people like her and learned more about recurrent pregnancy loss. Her research uncovered that having multiple miscarriages is a condition affecting about 2% of couples, and half of all cases have no explanation. The lack of answers and support led her and Ben to establish the Recurrent Pregnancy Loss Association (RPLA).
Bringing together those affected by recurrent pregnancy loss
“That was really our motivation for wanting to start RPLA,” Hanson said. “We both believed that when communities can come together and speak with one voice, they can be powerful partners for the medical and scientific community to move the field forward.”
Founded in 2019, RPLA is dedicated to research into causes of recurrent pregnancy loss and potential treatments, as well as to providing support and resources to those affected. Hanson also shares her story through RPLA to increase awareness of the impact of miscarriage and fertility challenges on women and families.
In just about a year’s time, RPLA joined the Genetic Alliance’s PEER Consortium, gathered a scientific advisory board, launched a research grant with the American Society for Reproductive Medicine Research Institute, and began to regularly provide support and information on clinical studies to their members.
Underpinning all this important work is the RPLA Community Registry, supported by the Luna platform. RPLA invites members to share their lived experiences with pregnancy loss as well as de-identified medical data for RPLA research collaborators who are examining the causes of recurrent miscarriages or treatments for recurrent pregnancy loss. The registry will continually build and become a data stream where answers to their members’ top priorities may be found.
A community of experiences
Hanson views members of RPLA not as patients, but as individuals with a shared, deeply personal experience. This individual-centered approach is a different type of advocacy, in that it brings people together who have experienced heartbreaking symptoms, have no known common disease or genetic condition, and are turning to each other for answers.
“Recurrent pregnancy loss is unique from a diagnosis of infertility, but as a group of people who experience multiple miscarriages, the underlying causes are really varied,” she said. “It’s a pretty heterogeneous group that would experience this condition. That diversity can make research exceedingly difficult for such a small group,” Hanson said, “especially when a small population is further divided into additional subgroups.”
She reached out to scientists and doctors to ask why it was so challenging to conduct research in this field of recurrent pregnancy loss. Over and over again, Hanson heard that the challenge was recruiting participants from an already small population for research. “They needed access to a bigger pool of information,” she said. With RPLA’s network, how could they help advance research?
Answering the challenge of high-quality information at scale is precisely what the RPL Community Registry aims to achieve.
Launching the RPLA Community Registry
Using the tools and platform of Genetic Alliance and Luna, RPLA is uniting individuals who have experienced multiple miscarriages into a data-sharing community where their privacy is protected and the individuals themselves control how their data is used. RLPA research collaborators “visit” the data to conduct studies. Together, they will listen for the right questions to ask, generate new hypotheses to test, as well as work to improve care, better understand why recurrent pregnancy loss happens, and determine how it can be prevented.
“That’s what we’re really hoping for with the registry—that when we come together and pool our information and share our experiences and data, it will allow a lot more questions to be asked and ultimately answered a lot more quickly,” Hanson said.
Gathering information on demographics, health conditions, and pregnancy history is just the start. The next step is selecting research partners who can help find the right questions to ask the community. “There are so many opportunities for research and understanding of recurrent pregnancy loss that can be gained through the registry,” Hanson said.
In addition, they also want to uncover any long-term consequences associated with multiple miscarriages. “While losing a pregnancy is difficult,” Hanson said, “it could also have a much bigger impact on women’s overall health than people realize.”
Launching a community registry quickly and with confidence using the Luna platform
“The registry is person-centered, where the participants own their data and have control over how it’s used,” Hanson said. “That was really attractive. That’s really what you want when you’re developing this type of community-led initiative. You want your community to truly have a voice.”
RPLA is currently welcoming individuals from around the world to join the registry. So far, the response has been incredible, she says. The next step is to reach out to obstetrics and gynecology offices and fertility clinics to increase awareness of the registry. Over the next several months, additional engagement opportunities and questionnaires will be launched to the community.
“Being able to regularly report back to the community on our progress and results will be really important,” she said. “Both to solidify our voice and harmonize as a group, increase engagement, and ensure people feel that they’re part of a movement that will make a difference.”
For such a young advocacy organization, RPLA has already pushed the community forward in terms of support and research. For other groups considering developing their own research questions or IT infrastructure, Hanson recommends looking for supporting organizations and technology that can get them up to speed quickly and strategically, and preserve budget for other areas that only the advocacy group can do.
“My advice is to join Genetic Alliance’s PEER Consortium and let them help you. There’s no need to recreate the wheel,” Hanson said. “Genetic Alliance and Luna already know how to do it well.”
Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.
Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.
By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.