International Survey for those living with Phelan-McDermid syndrome

 

by Diane Linnehan, Director of Operations

One of our PMSF scientific advisors, Conny van Ravenswaaij, MD, Ph.D, a clinical geneticist from the Netherlands, is coordinating an international consortium for the development of a clinical guideline for Phelan-McDermid syndrome (PMS).

In order to be sure that the guideline covers all topics that are important to parents, the consortium has developed a survey for parents or other family members caring for a person with Phelan-McDermid syndrome. This is an opportunity for you to share your experiences to influence the direction of the development of clinical (medical care) guidelines for PMS.

The survey is anonymous and can be completed online in several different languages (links below).

It would be greatly appreciated if you complete the survey before June 7th, 2021. For questions about the survey, send an email directly to the survey coordinator at 22q13@umcg.nl

The questionnaire includes 35 questions, should take a maximum of 20 minutes to complete, and must be completed in one sitting (you may not save answers and return).

Please complete only one survey per individual with PMS. Please note, you may receive this invitation to participate from several sources. If you have already participated in the survey, please disregard this request.