Welcome to the Peripartum Cardiomyopathy (PPCM) Registry (PPCM-R), a research registry and online study led by faculty at the Medical College of Wisconsin (MCW) in collaboration with the University of Pennsylvania College of Medicine (UPenn) and overseen by the Institutional Review Board (IRB) at MCW.
The overall goal of the PPCM-R is to better understand peripartum cardiomyopathy with the help of PPCM survivors who volunteer to take part in the research registry through self-reported survey responses, and sharing extracts from their medical records relating to their PPCM.
The PPCM-R website, portal and database is hosted by Ordinal Data, Inc.
PPCM-R Participants. How your information is handled, used, shared and secured is described in the Informed Consent Document (click here to see Informed Consent Document) that you will e-sign before becoming a participant and user of the Registry portal. Your participation in the PPCM-R is only carried out pursuant to and in accordance with the informed consent. Any changes to the PPCM-R will require an amendment to the informed consent and the PPCM-R staff will contact you via email if any changes are to be made.
Withdrawal from the Registry
To stop participating and withdraw from the PPCM-R you should contact the individual named in the informed consent. All of the information you provide to PPCM- R in connection with the Website is managed according to the informed consent. You may withdraw from PPCM- R at any time, for any reason. To withdraw, please email us at PPCMR@mcw.edu. However, if you withdraw your consent, your data collected prior to withdrawing may remain part of the study database and may not be removed. Additionally, any information that was already released to external parties may be irretrievable. In addition, PPCM-R may not be able to delete certain information to comply with the law.
All PPCM-R Website Users
Collection, Use, and Disclosure of Information
Collection of Information. All of the information you provide to PPCM-R will be maintained in a secure, HIPAA compliant database, and any information that could identify you will not be shared without your express consent per the informed consent document.
Use and Disclosure of Information. Identified and de-identified data may be shared outside of this database, with your express consent per the informed consent document.
Any information you provide to third parties, whom you have contacted through the PPCM-R will be subject to their policies with respect to privacy and nondisclosure of information. We encourage you to familiarize yourself with those policies.
PPCM-R may employ independent contractors, vendors, and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or to the services provided on the Website, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Website and the services provided on the Website. These Outside Contractors may have limited access to information collected on the Website, including personally identifiable information, in the course of providing such products or services.
Protection of User Information
PPCM-R will use commercially reasonable methods to protect the security of information and data submitted to the Website. Users should keep in mind, however, that no Internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.
PPCM-R reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. These companies may use information you provided on this Website (excluding your name, address, email address, or telephone number) and other sites in order to provide advertisements or relevant notifications on the Website and other sites about goods and services that may be of interest to you. PPCM-R will encourage such companies to follow best practices with respect to the collection and use of non-personally identifiable information and personally identifiable information that was not obtained from your participation on the Website; however, PPCM-R assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, they may still use the Site.
Log Files; Web Beacons
PPCM-R may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.
The PPCM-R may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.
Communications From PPCM-R
We will notify users of updates and other valuable information about the PPCM-R, the Website and related clinical and research information. By using the Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by PPCM-R.
PPCM-R reserves the right to disclose your personal information, without notice, if required to do so by law or in the good faith belief that such disclosure is necessary to: (i) conform to the edicts of law or comply with legal process served on PPCM-R (ii) protect and defend the rights of PPCM-R, MCW and U Penn, and (iii) act under exigent circumstances to protect the personal safety of users of the Website or the public.
Contact Us; Member Accounts
Children Under The Age Of Eighteen (18)
Participants Outside of the United States. Participation in the PPCM-R is not directed at or intended for people who reside outside the United States. This may change in the future and will appear on the Website if and when such participation is expanded.
Notification Of Changes
Data is stored in a secure HIPAA compliant, HITECH certified hosting facility. The hosting facility is also SSAE-16 (formerly SAS70) & Safe Harbor Compliant. We use VMWare to virtualize servers and all servers are backed up daily. The application keeps subject identity data and subject health data in separate data repositories. Records are linked with a key that is encrypted with a one-way hash. This architecture safeguards against unauthorized access to health or identity data. Offsite backups may be held by a third party to guard against data loss. Appropriate security measures minimize risks such as loss of confidentiality, identity theft, electronic fraud/security breaches, electronic monitoring, stalking or bullying, hacking, and phishing. Only authorized personnel can access the data center. All data transmission (uploading and downloading) occurs over secure, encrypted channels.
PPCM-R is deeply committed to issues of privacy and identity. The PPCM-R will take every available measure to protect personal information against loss, misuse, and unauthorized access, disclosure, and deletion. The information you provide to the PPCM- R will be maintained in a secure database. While we will do our best to keep your personal information private, we cannot guarantee absolute confidentiality.