Update Regarding Registry Participation and Informed Consent

Important Update Regarding Registry Participation and Informed Consent


On July 15, 2014, the Phelan-McDermid Syndrome Foundation made important updates to the Registry in response to new research opportunities in Phelan-McDermid Syndrome. We want to share these updates with you. A summary of the updates is below.

Summary of updates

  1. The Foundation was recently awarded a contract with the Patient Centered Outcomes Research Institute to establish a new Phelan-McDermid Syndrome Data Network (PMS_DN) in partnership with Harvard Medical School. This form provides information about the PMS_DN, one of the databases with which participant information may be shared.
  2. “Understanding Your Participation” now includes clear, step-by-step details of what to expect if you agree to participate in the Registry and how the Registry protects the confidentiality of your personal information. This page also includes more information on the kinds of attachments you can upload to the Registry, including medical records, genetic reports, scans of images, and other PMS-related reports, data, or documents.
  3. The Informed Consent form now includes 8 questions (the previous form included 7) and gives you more options for how your data are shared and how you may be contacted by the Foundation in the future.

Please read this revised “Understanding Your Participation” page, click “Next” at the bottom of the page, and read the revised Informed Consent form. If you and your family still wish to participate in the Registry, please indicate so by completing the questions in the Informed Consent and selecting “Yes” in response to the question, “I agree to participate in the Registry.” After you have completed this step, you will not be asked to review this information again.

Thank you for your continued commitment to advancing knowledge, health and wellbeing for our community. If you have any questions after reviewing these documents, please don’t hesitate to contact the Registry Coordinator at This email address is being protected from spambots. You need JavaScript enabled to view it..