Resources for professionals seeking FSHD research projects or clinical trials

For Scientists

FSH Society Contacts, Information and Resources for Scientists

Programs to Network Scientists to Scientists, Resources and Patients

The FSH Society offers resources for professionals interested in participating in FSHD research projects, clinical trials or research studies, and in donating FSHD biomaterials, reagents, tissues and animal/cell model systems to medical research.  For additional information on currently active clinical trials, please visit

The Society’s research and grant programs recognize the need for foundations, infrastructure, research resources and an integrated systems biology approach.

At the 2006 FSH Society Tactical and Strategic research meeting, researchers were asked to identify the most important issues impacting FSHD research.  There was consensus of opinion among the investigators about the need to establish a process to arbitrate experimental discrepancies leading to paradoxical findings through independent validation, third party, or double blind studies; and for the production, utilization and distribution of baseline reagents and detailed protocols in an effort to eliminate variability resulting from subtleties associated with experimental materials and techniques.   Recommendations included an FSH Society web research resource that helps to create uniform research reagents and materials for the purpose of providing consistent experimental materials, such as antibodies, cell lines and animal models, and to encourage the deposit of all cell lines in an established repository.  The FSH Society offers its assistance to help promote sharing and propagation of research materials.  Please contact us if you wish to include a statement on this website describing a plan to make resources available such as: mice strains, cell lines, antibodies, probes and sequence information.

To facilitate communication among FSHD researchers, the FSH Society maintains a list of international research contacts.

To share, discuss and listen to ideas on FSHD research with other researchers and clinicians working on FSHD, be sure to register for the annual FSH Society International Research Consortium meeting.  Also, please advise us of items you would like us to disseminate relating to research materials, training opportunities, FSHD meeting reports, special interest research groups, etc., and we will post. 

For actively funded FSHD researchers the Society offers access to its FSHDWiki to share data, unpublished results, detailed research protocols, research progress reports, discussions by active researchers, and much more.

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FSH Society, Inc. • 450 Bedford Street • Lexington, MA 02420 • Tel: 781 301-6060 • Fax: 781 862-1116