Thursday, March 4, 2010

Help HDSA Fight Huntington's Disease!

The best defense is a good offense.  The more we know about our enemies, the easier it is to win.  You know their weaknesses and their advantages, which in turn helps you prepare for the next volley.

HDSA is asking for us all to join in the fight against Huntington's Disease through means of education and awareness.  Louis Vetter of the MN HDSA Chapter is making a personal plea, asking those with HD in their families to help with the clinic trials here in Minnesota.

This is a very exciting time for the HD community. Today there are four Phase III Clinical Trials and one Phase IIB clinical trial  in progress to study potential treatments for HD.   There are also two very important observational studies underway as well to identify biomarkers and improve understanding of the progression of the disease.

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?
If you have Huntington's Disease, please consider participating in the trial studies. 

MINNESOTA CLINICAL TRIAL SITES

2CARE (CoQ10 Phase 3)

Golden Valley, Minnesota
Struthers Parkinsons's Center
Sarah Lenarz
952-993-5903

COHORT (Observational)
Minneapolis, Minnesota
HDSA Center of Excellence at
Hennepin County Medical Center
Dawn Radtke
612-873-2943

CREST-E (Creatine Phase 3)
Golden Valley, Minnesota
Struthers Parkinsons's Center
Sarah Lenarz
952-993-5903

HART (ACR16/Huntexil Phase 2B)
Golden Valley, Minnesota
Struthers Parkinsons's Center
Pat Ede
952-993-2245

HORIZON (Dimebon Phase 3)
Golden Valley, Minnesota
Struthers Parkinsons's Center
Judy Hamerlinck
952-993-6589

PREDICT (Observational)
Minneapolis, Minnesota
HDSA Center of Excellence at
Hennepin County Medical Center
Dawn Radtke
612-873-2943

The hope of many in the near future rest on the actions of a few right now.

~Your City Wide Team