Submitted by Marsha Miller Ph.D. on Mon, 01/24/2005
The Huntington Study Group (HSG) is a network of 260+ Huntington?s investigators and scientists from 60+ academic and research institutions in the United States, Canada, Europe and Australia. The organization was formed for the primary purpose of conducting coordinated clinical trials. This organization (HSG) is separate from the Hereditary Disease Foundation (HDF) founded by the Wexler family; though many of the scientists in HSG receive research funding from HDF. It is easy to confuse the two because members often overlap.
Earlier this week I was looking through the Huntington Study Group (HSG) web site and came across their new ?Request for Proposals? announcement. And I thought ?Wow?. What a great way for HSG to start the New Year. They are inviting proposals from investigators who would support pilot clinical trials for potential therapeutic agents in Huntington?s. The goal is to test novel therapeutic agents in individuals with HD and to cultivate new investigator leadership for future HSG trials. ?Funds in the amount of $50,000 have been provided to HSG? from an unnamed source? to make this effort possible.
Dear ?Unnamed Source of Funding? and HSG; we thank you both for this innovative program to encourage new starts for clinical trials in HD. With scores of SET-HD candidate agents lining up, this funding could not have come at a better time. It?s a good start for the new year.
HSG Convention Posters Publication: Another Good Thing
The 12th Huntington Study Group Annual Meeting was held in November 2004. And HSG has placed the poster presentations from that meeting on the web site for public review at www.huntingtonstudygroup.org. It?s not as thorough as reports that follow Hereditary Disease Foundation meetings, or HDSA national conventions, but . . this posting is a positive step to improve communication of events from this HSG annual meeting to the HD family population.
Leftover 2004 Gripes
But, (and I realize this is a little critical) HSG has not further reported on this event that means so much to HD people. However the Huntington?s Disease Society of America (HDSA) did include a page about this meeting in their winter ?Toward?s a Cure? publication. They tell us that ?More than 200 members . . . attended. Clinicians, research coordinators, consultants, and representatives from the National Institutes of Health (NIH), advocacy representatives from HDSA and from Huntington?s Society of Canada, as well as invited guests from Europe.? For sure these are all very important people; but note the absence of (the presumed unimportant) HD people/families. HDSA further reports ?Much of what was discussed remains confidential.? I presume this means that the people who are going to be in the clinical trials aren?t invited (or allowed) to be part of the clinical trial discussion. Sad that we have been shut out of this discussion that so much affects our lives.
But that was 2004. This is 2005. And I?m more optimistic that we can work together towards promoting clinical trials in HD. And we can work together best when HD people are permitted to be participants (not just subjects) in their clinical trial system. Remember that this generation has some life left: we?re not dead yet.