The Mowat-Wilson Syndrome Foundation is pleased to report on the significant progress being made with the Mowat-Wilson Syndrome Patient Registry. The registry was launched back in November, 2016. Here is what Dr. Margaret Adam said at the time.
“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.”
A recap of the participation data through January 31, 2017 shows:
- 64 Registrations
- 50 Background surveys completed and 6 in progress
- 47 Maternal Information surveys completed
- 24 Genetic Information surveys completed and 20 in progress
- Information shared from individuals in 11 different countries
The MWS Foundation wants to extend a big “thank you” to those who have gotten involved in the process of sharing their data. We also want to ask that if you have started the process but have not completed any of the first 3 surveys to please do so. Our plan is to begin adding additional, condition specific, surveys with the next few months. The first 2 of those additional surveys will be for Gastrointestinal issues and seizures.
We encourage you to start the process by reading the Registry FAQs. If you are ready to start sharing your data, click here.
If you have not yet begun the process, we ask that you please consider getting involved by sharing your data…Because we don’t know what’s possible.
Director, Mowat-Wilson Syndrome Foundation