Participate in Research

Although Sturge-Weber syndrome can be managed and the cause has been found, critical studies for underlying pathways are needed before therapies can be developed. Research for Sturge-Weber syndrome (as with all rare diseases) is often hampered by the lack of investigators interested in researching it or from an unavailability of tissue samples or the difficult to find clinical trial participants necessary to conduct a study.

 

CISCRP - The Center for Information & Study on Clinical Research Participation:  The Education Center can help you learn about clinical research and what it means to be a clinical research volunteer.

 

  • Tissue Donation: Sturge-Weber Syndrome (SWS), and Klippel-Trenaunay (K-T), are just two of the perplexing medical mysteries whose answers will only be found with continued and dedicated research. For this reason, the brain and tissue banks were instituted with the expressed goal of advancing meaningful research.  Read More
  • Current Studies Seeking Participants: Although Sturge-Weber syndrome can be managed, there is no cure. Research for Sturge-Weber syndrome (as with all rare diseases) is often hampered by the lack of investigators interested in researching it or from an unavailability of tissue samples or the difficult to find clinical trial participants necessary to conduct a study. Read More

Notice of these studies is being offered for informational purposes and should not be seen as an endorsement of the study by The SWF.

  

 

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Research Articles

 

  

Juhaz opt200Csaba Jahasz, MD, PhD Brain imaging in different disease stages: clinical applications and research directions

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