Frequently Asked Questions
The investigators of the PPCM-R are available to answer your questions and assist you with completing your PPCM-R account. If you have any questions regarding the consent process or the Registry’s IRB-approval, please email the team at PPCMR@mcw.edu.
The time to complete surveys will vary. Each survey is expected to take between 10 to 20 minutes. Not all surveys need to be completed at the same time and progress can be saved.
We request that you visit the PPCM-R every 3 months. This helps to ensure your contact and health information are current. You may also periodically receive emails requesting you to log in and answer some additional survey questions. Your ongoing participation helps ensure that PPCM-R data remains responsive to current research needs.
There is no compensation for enrolling in PPCM-R.
There are many questions that may be answered through PPCM-R research. For example:
- What is the risk of PPCM relapse in future pregnancies?
- What is the best way to screen for PPCM?
- What is the best treatment regimen for PPCM?
The more information you can contribute about your history with PPCM, the better!
PPCM- R will continue to evolve as research advances. Additional surveys may be added and existing ones may change based on future need. Some will be shorter because only a few answers are needed; others will be more comprehensive, as needed, for research.
- You may be asked to contribute information about your contact information, previous heart testing, family history, symptoms, disease progression, medical history, and current treatments in surveys.
- You will also be asked to link and/or upload medical records, clinical notes, imaging, and/or testing reports.
PPCM-R wants to make sure that you clearly understand how and why your health data is being requested. We also want you to be fully informed about the risks and benefits of participation. The informed consent statement, along with other materials, have been reviewed and approved by Medical College of Wisconsin Institutional Review Board.
Your participation in PPCM-R may include the following:
- Creating an account and providing your consent
- Completing research surveys
- Uploading or linking your electronic health records
Your participation is entirely optional and you may withdraw at any time.
After a number of patients have responded to form an initial pool, the PPCM-R participants will be able to monitor their own health history in comparison to the aggregated and de-identified survey responses from all PPCM-R members.
PPCM-R would appreciate your suggestions. A key component of PPCM-R is its community-centric focus, and we strongly encourage participants to provide feedback. Please email your comments, questions, or concerns to PPCMR@mcw.edu.
Your healthcare providers can participate by helping to spread the word about PPCM-R. Please feel free to ask your healthcare team to contact us at email@example.com or any of our individual emails to obtain recruitment information.
You will receive updates via text messaging, phone call and/or email about every 3-6 months. Updates from the PPCM-R may include (1) requests to update your demographic or health data; (2) requests or reminders about new surveys, to finish incomplete surveys, or to start a new survey; (3) information about how to link or upload your medical records and/or for specific medical record requests.
You may also receive periodic updates via text messaging, phone call and/or emails pertaining to updates about the PPCM-R, news about research findings, general care guidelines or educational resources, information about meetings/conferences, opportunities to participate in clinical studies or trials, and/or notifications about future natural history studies.
- Participation and questionnaires – It is possible that reviewing health related events and completing surveys may cause emotional distress, embarrassment, or discomfort. These risks are anticipated to be minimal. You may decide to not complete a survey at any time.
- Confidentiality of data, including personal information – There is a risk of loss of confidentiality. The security and privacy of your personal information and data is an important concern for us. Reasonable efforts will be made to protect you and your health information to the extent possible. The company developing the PPCM- R website and computer systems will take reasonable technical precautions to keep your data secure. Absolute confidentiality cannot be guaranteed.
- Unforeseeable/unknown risks – There may be risks that are unknown at this time. You will be notified of any significant new findings that become known that may affect your willingness to continue in the study.
Benefits to registering may include:
- Participants will be able to compare their survey responses to the aggregated and unidentified survey responses provided by other individuals registered in PPCM-R
- Educational resources specific to PPCM.
- Information about PPCM advocacy groups, meetings/conferences.
We need your help to learn more about PPCM
We believe you should register because:
- As a survivor of PPCM , you know your disease better than anyone. When you take surveys about your experiences and symptoms and share your medical records, you can help create a key resource for research. Every piece of data expands the information that researchers can draw from.
- It’s secure and easy to participate. Registration is simple and completed entirely online. With your informed consent to participate in research, you can contribute health data through surveys and by uploading medical records. PPCM-R is built to protect your identity and privacy.
- Your data can help bring us closer to a cure. PPCM-R data may help research and clinical trial progress more quickly and more efficiently. The data will be a powerful tool for clinical trials, treatments, and improved care.
Participation in PPCM-R is completely voluntary. It is your choice to participate. You may also withdraw and stop participating for any reason and at any time.
The following individuals are eligible to register for PPCM-R:
- A women with a history of PPCM or in active treatment for PPCM
- Women over 18 years old
- Women residing in North American with PPCM treatment in North America
PPCM-R has three main goals:
To create a database of PPCM survivor medical stories through voluntary registration, self-reported survey questionnaires, patient-mediated medical record collection to answer research questions and hopefully prevent the disease from affecting more families.
To be the source of expert interpreted reliable information about PPCM.
To be a partner for PPCM advocacy groups in education and research initiatives.
PPCM-R is a research study to investigate Peripartum Cardiomyopathy. To our knowledge, it is the only registry in the world that aims to gather data provided by survivors.
Yes, absolutely! We are always happy to receive additional reports.
In the United States, with limited exceptions, the HIPAA Privacy Rule (the Privacy Rule) provides individuals with a legal, enforceable right to see and receive copies upon request of the information in their medical and other health records maintained by their health care providers and health plans.
For more information, see:
There are 2 options to share your medical records. You can share your medical record in one or both ways. Sharing medical records is voluntary.
- Upload PDFs. You can upload PDFs (or scans) of any medical records, such as clinical notes, imaging, and/or testing reports. Records are stored on a secure database, and will be available to you at any time by logging into your CFR profile.
- Link your electronic health records via application programing interfaces (APIs). You may be able to connect your on-line portal from your care provider or other repository of electronic health information to PPCM-R.
- Types of information that will be examined in your medical records include but are not limited to patient identifiers, demographics, diagnoses, medications, procedures, outpatient and in-patient visits, laboratory results, vital signs, doctor notes.
PPCM- R will provide helpful instructions to upload and/or link your records.
- Your medical records include a wealth of data that is relevant to researchers. Medical records submitted to the PPCM-R can help to better understand the complete natural history of PPCM and lead researchers to answers about PPCM.
- Uploading or linking your medical records is entirely voluntary and not required to register in PPCM- R.
PPCM- R is funded by a combination of research grants. The founders of PPCM-R are doctors actively involved in research with a mission to find treatment and a cure for PPCM.
We take your privacy very seriously and have policies and processes in place to safeguard your identity and protect the health information you share with us. Your personally identifying information and personal health information are only shared with your consent. Please review the informed consent document for more information.
PPCM-R takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. Any information shared with our research partners, including any identifying information, will be handled carefully per our informed consent.
Information you share will be stored in the PPCM- R for as long as the PPCM- R exists and you authorize participation.