Peripartum Cardiomyopathy Quality of Life Registry

What is the Peripartum Cardiomyopathy Quality of Life Registry (PC-QoL Registry)?

Peripartum Cardiomyopathy (PPCM) is a type of heart failure that develops in young women during pregnancy or after giving birth. This condition has a potentially devastating impact on new mothers and their families. However, medical providers know very little about the long-term physical and emotional needs of women with PPCM and their families.

 

We created this registry to help medical professionals and researchers learn more about women’s physical and emotional recovery, and quality of life experiences in the context of pregnancy-related heart problems. Medical providers and researchers can then use this information to develop comprehensive programs to assist patients and their loved ones in their recovery.

 

Why should I enroll?

• To increase awareness of the long-term physical and emotional needs of women diagnosed with PPCM.

• To help researchers learn more about the factors that affect women’s recovery so they can develop treatment programs for patients and families.

• To help improve prevention and treatment of emotional distress in patients and their families coping with PPCM.

• To receive information and updates from PC-QoL Registry via periodic newsletters.

 

Who is eligible to participate?

• Women age 18 and older

• Who have been diagnosed with pregnancy-related heart failure since 2007

 

How do I participate?

You can join the Registry by completing a survey online through our secure website. If you do not have access to the internet, a paper copy of the registration questionnaire can be mailed to you along with a return envelope that has been pre-addressed with postage included. Please contact us via phone or email to request a paper questionnaire.

 

What will I be asked to do?

You will be asked to complete a brief survey online or on paper, if requested, that will include questions about your health history and current health behaviors. Questions about your emotional well-being and social support are also included in the survey.

 

Do I have to give my contact information?

No.  Women who chose to participate in this registry do not have to provide any personally identifying information (e.g., name, address, email). However, some women may want to receive registry updates or participate in future research studies.  For women who wish to receive registry updates or information about future studies, there is an option to provide contact information at the end of the questionnaire. Please note that receiving registry updates is optional and your contact information will not be linked to your survey responses.

 

Is my information private and where is it stored?

Yes, absolutely. Privacy is critical, so the Registry adheres to state, federal and university regulations to safeguard individual rights and privacy. The PC-QoL Registry has been approved by the Committee for the Protection and Rights of Human Subjects Institutional Review Board at East Carolina University.

 

Should I be worried about confidentiality when filling out the online survey?

No. The survey operates from a secure website located at East Carolina University. All information will be stored on a secure server that is password protected.  Only you and the study researchers listed on this form will have access to your data. 

 

Who should I contact if I have questions about the Registry?

Contact us via email if you have additional questions about the registry. You can also use the online form under the 'Contact the Registry' tab located on the registry homepage.