PPCM-R is an online research registry for PPCM survivors. We aim to prevent, treat and cure PPCM through education & research.
Our 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. The registry, PPCM-R, was envisioned as an online hub to unlock the knowledge of affected individuals and make progress toward a world without PPCM.
Why participate?
Researchers need to better understand the stories of survivors to successfully develop testing and PPCM treatments. By voluntarily sharing information with the PPCM-R. Participants can help ensure that the field is focused on aspects of the disease that are most important to survivors.
PPCM-R has four goals:
- To create a database of PPCM survivors with voluntary patient-mediated registration including survey questionnaires and medical record collection
- To answer important research question
- To be a source reliable educational information about PPCM
- To be a partner for PPCM advocacy groups in education and research initiatives