The PPCM-R Origin Story
In 2019 Dr. Arany, Dr. Lewey and Dr. Thordsen started working on building a Peripartum Cardiomyopathy Registry, later named PPCM-R, with the goal of better understanding Peripartum Cardiomyopathy. As doctors and scientists, they realized that the lack research on Peripartum Cardiomyopathy was due to the difficulty finding large groups of PPCM survivors. This challenge, gathering survivors willing to share their stories, was the key to finding treatments. The registry, PPCM-R, was envisioned as an online hub to unlock the knowledge of affected individuals and their families and make progress toward a world without PPCM.
Your Data Helps Advance Research
PPCM is rare, so each participant is crucial. Researchers need to better understand the stories of survivors to successfully develop testing and treatments. By voluntarily sharing information with the PPCM-R, through self-reported survey responses and sharing your PPCM medical record, you can help ensure that the field is focused on aspects of the disease that are most important to survivors.
PPCM-R will start with enrolling USA based PPCM patients in 2023, we anticipate beginning international enrollment in the future. The PPCM-R welcomes those who have been diagnosed with PPCM. Registration is easy and you can choose what information you want to share through surveys and your medical records.
PPCM-R has four main goals:
1. To create a database of PPCM survivor medical records driven by patients, with voluntary patient-mediated registration, survey questionnaires, and medical record collection
2. To answer important research questions and ultimately prevent PPCM
3. To be the source reliable information about PPCM, interpreted by experts
4. To be a partner for PPCM advocacy groups in education and research initiatives