National Institutes of Health (NIH)-Funded Landmark Sturge-Weber Research Workshop

JULY 16, 2015

National Institutes of Health (NIH)-Funded Landmark Sturge-Weber Research Workshop

The National Institutes of Health (NIH)-funded landmark research workshop “Leveraging a Gene Discovery: An Agenda for Future Research” took place in Bethesda Maryland on April 19-20, 2015. Dr. Anne Comi chaired this meeting which was organized in collaboration with the Sturge-Weber Foundation, the NIH, and an organizing committee from academic institutions around the country. Fifty-five researchers, trainees, and clinicians with expertise in Sturge-Weber syndrome gathered to share ideas and agree on research priorities for the next few years. A summary of this meeting is being drafted now for publication.

Four main priority areas for near future collaboration and research efforts were identified. Those priorities areas are:

  1. Clinical consensus for optimal diagnosis and care of patients with Sturge-Weber syndrome
  2. Development of cell culture and animal models for Sturge-Weber syndrome
  3. Developing a more extensive and integrated network of centers for clinical research
  4. Improving the ways in which tissue for research is obtained, stored and provided to researchers

We hope better treatment guidelines and new treatment options will come from these efforts.

The researchers at the Hunter Nelson Sturge-Weber Center will be involved in these efforts moving forward. Look for more updates in the future as progress is made on each of these fronts. All patients at the Hunter Nelson Sturge-Weber Center are offered the opportunity to participate in research. However, this is ALWAYS voluntary. We are happy to provide medical care to you or your child even if you do not wish to participate in research.

Check back weekly for new posts and up-to-date information from Sturge-Weber syndrome expert Dr. Anne Comi.

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Want to know more about the exciting research going on at the Kennedy Krieger Institute to discover new therapies for Sturge-Weber syndrome?

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