European Projects Office to Develop Clinical Guidelines and Care Tools for Williams Syndrome

Nowgen’s European Project Office has received funding from the UK Williams Syndrome Foundation to develop clinical guidelines and care tools to support healthcare of Williams Syndrome patients. Williams Syndrome is a rare genetic condition affecting approximately 1 in 25000 individuals. The Foundation is run by parents of Williams Syndrome patients, raising funds for research, to improve the welfare of those with the condition.

This initiative will soon be underway. The project’s first stage will involve updating the American Academy of Pediatrics’ (AAP) recommendations for Williams Syndrome follow up care, which were published in 2001. In order to make these changes a thorough search of research published since the AAP guidelines will be undertaken, and a national meeting for UK experts in Williams Syndrome will be held. The aim is to establish an expert consensus that will inform the recommendations for the clinical management guidelines. This consensus will also feed into the development of further care tools, to include diagnostic and review checklists for physicians, emergency care information and guidelines, and a Personal Health Record (PHR).