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Statistics National Huntington’s Disease Research Roster consists of more than 2,250 families world-wide. This roster, based at the Indiana University Medical Center in Indianapolis, provides valuable information about HD. All families who are affected by Huntington’s Disease are welcome and encouraged to participate. Of the more than 130,000 individuals who are listed on the roster, about 13,000 have now or did have HD (about 4,100 are still living). In order to participate in this program, please contact Indiana University Medical Center: (317) 274-5744 The roster utilizes the following status definitions in their program: AFFECTED- diagnosed clinically as having HD POSSIBLY AFFECTED- showing minor soft signs of HD POSSIBLE GENE CARRIER- at risk individual who died without showing symptoms of HD an had an offspring who became affected AT RISK x2- both parents had HD. Risk of developing is 75% AT RISK- one parent had HD. Risk of developing is 50% HALF AT RISK- grandparent had HD; parent is currently not symptomatic. Risk of developing is 25% POSSIBLY AT RISK- grandparent may have been symptomatic for HD. Risk is less than 25% OTHER- No known risk of inheriting HD In a state-to-state comparison, Indiana has the highest number of contacts on the roster. More than 12% of the number of contacts from the US are Hoosiers! The larger the number of participants in the roster, the greater force the HD population builds. Increasing awareness of this horrible disease will help further our efforts for funding and programs to assist those who are affected by HD. Therefore, it is extremely important for the future strength of our effort and for future programs that you participate in the roster. All of the information that you provide remains within the roster itself. No individual’s information will be disclosed. The role of the roster is to accumulate the information to benefit the population. This is done by combining all of the information and not disclosing individual information. The National Huntington’s Disease Research Roster publishes its statistics on a regular basis. Interested individuals can contact HDSA Indiana Chapter for recent information. |
