Peripartum Cardiomyopathy Quality of Life Registry

The Registry was developed for women diagnosed with pregnancy-related heart failure or Peripartum Cardiomyopathy (PPCM) and is managed by the Cardiac Pscyhology Lab at East Carolina University. It collects and organizes information that women with PPCM provide about their health history, emotional well-being, social support and current health behaviors. It also connects women with PPCM and their families to doctors and scientists currently researching the condition.

 

Why is a registry necessary?

PPCM is a leading cause of pregnancy complications and maternal death. However, little is known about the long-term physical and emotional recovery of women with PPCM and their families. To help medical providers better understand the long-term needs of women with PPCM, researchers at the East Carolina Heart Institute at East Carolina University have created the Peripartum Cardiomyopathy Quality of Life Registry (PC-QoL Registry).

 

The Registry is intended to increase research in the area of women's health by serving as an informational resource as well as a recruiting tool. Because PPCM is a rare heart condition, gathering data from a large number of women with PPCM can be difficult. Therefore, an internet tool, like the Registry, provides an easier and faster way to gather important information from women with PPCM.