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Fw: HDSA Leaders: Help us Raise Awareness of Clinical Research

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  • Dave Hodgson
    Illinois Chapter TEAM HOPE-Walk For A Cure http://www.HDWalk.org Ill. Chapter-HDSA Web Page http://www.hdsa-il.org Sponsor Dave & Susie s Walk
    Message 1 of 1 , Mar 1, 2010
      Illinois Chapter TEAM HOPE-Walk For A Cure
      Ill. Chapter-HDSA Web Page
      Sponsor Dave & Susie's Walk
      ----- Original Message -----
      Sent: Monday, March 01, 2010 4:10 PM
      Subject: HDSA Leaders: Help us Raise Awareness of Clinical Research



      This is a very exciting time for the HD community.  Today there are four Phase III Clinical Trials (2Care – CoQ10, CrestE – Creatine, Horizon – Dimebon, Prequel – CoQ10 in pre-manifest) and one Phase IIB clinical trial (HART-ACR16) in progress to study potential treatments for HD.  There are also two very important observational studies, Predict-HD and COHORT underway as well to identify biomarkers and improve understanding of the progression of the disease.


      At the recent CHDI Therapeutics Conference there were presentations of several exciting new approaches to promising targets that will hopefully enter the clinical phase in the next year or two. Additionally, positive initial results from the MermaiHD Trial, the European Phase III Clinical Trial of Huntexil (ACR-16), were presented at the conference (visit www.HDSA.org for more details.)  As of today, there are still 29 openings in the HART Trial -- a full two weeks after positive results were reported from its European counterpart -- and many openings in the others.


      Just as it took cooperation between HD families and scientists to identify the huntingtin gene in 1993, the successful identification of therapies and eventual FDA approval is dependent on HD community members working with scientists by participating in clinical research. Without these trials, there can be no therapies.


      To date, recruitment for current clinical trials of potential therapies for Huntington’s disease has been slow.  This is concerning. A delay in recruitment means a delay of a potential therapy being approved by the FDA.  Additionally, there is a possibility that companies will opt to test potential therapies in Europe , where historically recruitment has taken less time. 


      I know that participating in clinical research is a commitment and a very personal decision. Each clinical study has different parameters that determine if someone is eligible to participate, including their stage of HD and medicines being taken. Many require multiple doctor visits which take considerable time.  However, imagine if more life-changing drugs were approved in Europe, and not available in the United States ?  


      I am committed to making sure that the best possible therapies are available to our families, and that’s why HDSA is making education and awareness about clinical research a top priority.


      To help with this important effort, I am asking you as a chapter leader to support this by taking the following steps:


      ·         Go to www.hdsa.org/research/clinical-trials/find-your-closest-clinical-trial.html to find the local clinical research sites near you.  Share this information on your local website, in newsletters, at events and meetings, and wherever you can!


      ·         Invite a representative from your local clinical trial site to attend your educational events.


      ·         Discuss the importance of clinical research at your upcoming educational events and support groups.  A new educational syllabus focusing on clinical research will be ready for all chapters at the end of March, so stay tuned for more resources.


      ·         Encourage everyone you know to sign up with www.HDTrials.org to receive regular information about clinical research going on in their area. 


      ·         Ask your chapter members to volunteer to take clinical research participants to their appointments if their caregiver/companion is not available.


      ·         Also, keep an eye out for an announcement later this spring regarding a new group of “Clinical Research Ambassadors” – HD family members who are being trained to help answer questions about clinical research and share their experiences. 


      At HDSA we are working closely with other groups, including CHDI, the Huntington Study Group and many of the biotechnology and pharmaceutical companies, so that clinical trials are as ‘user-friendly’ as possible.  But discovering treatments and cure for HD takes all of us working together.  


      This is a real opportunity for you to make an impact on the lives of everyone affected by HD.  I encourage you to share this information with your local boards.   Your feedback is vital to our success, so please reach out to me if you have any questions, concerns or suggestions on how we can make it easier for people to participate in these important trials. 


      Thank you for all you do in the fight against HD and for making a difference in the lives of so many.






      Louise Vetter

      Chief Executive Officer

      Huntington's Disease Society ofAmerica

      505 Eighth Avenue

      Suite 902

      New York ,NY  10018

      p. (212) 242-1968, ext 220

      f.  (212) 239-3430

      e. lvetter@...


      Help for Today.  Hope for Tomorrow.




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