MWS Patient Registry
Research for a Better Life. Your Data Matters!
The Mowat-Wilson Syndrome Foundation is extremely pleased to announce that we are the recipient of a grant thru Genetic Alliance to establish a MWS patient registry using their Platform for Engaging Everyone Responsibly (PEER) to build and house the MWS patient registry.
Dr. Margaret Adam, MD, who is a member of the Mowat-Wilson Syndrome Foundation Medical Advisory Board, will serve as the primary scientific advisor for the MWS patient registry. Dr. Adam is Professor of Pediatrics, Division of Genetic Medicine at the University of Washington in Seattle, WA. Here is what Dr. Adam had to say about the registry.
“It is with great pleasure that I write this letter in support of the partnership between the Mowat-Wilson Syndrome (MWS) Foundation and the PEER platform. As a clinical geneticist, I have had the opportunity to both care for individuals with MWS and to participate in clinical research projects to help further our understanding of this condition. As is true for many rare genetic conditions, our ability to collect clinically relevant information that can help physicians provide excellent patient care is limited because each provider has only a small number of patients with the condition. Therefore, to further our knowledge of the breadth of the condition requires engagement of the involved community and a platform in which information can be securely and accurately entered and curated. This in turn will allow expert clinical researchers to extract important information and identify rare complications that will aid physicians who care for individuals with MWS. After reviewing the PEER platform, I feel that it is ideal for this endeavor. As a scientific advisor to the MWS Foundation, I look forward to working with them on implementing this platform and bringing it to the greater MWS community.”
Questions? Don’t hesitate to contact us.
We are currently working on a new version of the register. We will announce when it’s up and running. We apologize for the inconvenience.
We highly recommend reading the FAQs before you start.