Huntington Disease 

National Huntington Disease Research Roster

What is the Huntington Disease Research Roster?
A research roster of Huntington Disease patients and families was established in 1979 at Indiana University in response to a recommendation from the Commission for the Control of Huntingtons Disease and its Consequences. The National Institute of Neurological and Communicative Disorders and Stroke sponsors the Roster. 

The HD Research Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in participating in research projects. 

What does the Roster do?
Since many investigators are intrigued by Huntington Diseases and are eager to work on the problem but need access to HD families, it is important to have a system whereby scientists and HD families can get in touch with each other. 

The Roster makes this happen by matching scientists with the right research volunteers listed in the Roster. 
Some researchers only need statistical information while other special projects may require a sample of blood, urine or skin from HD family members. The people on the staff explain the particular research study to each individual or family. If they are willing to participate and give written permission, the individual¹s family name and address are given to the investigator. 

Section 1
	Important Facts about the Roster: 
•	It is totally VOLUNTARY. 
•	You can ask to be taken off at any time. 
•	No information about you will be given to anyone without your WRITTEN permission. 
•	No one, including your own family members can find out if you are even listed in the Roster without your WRITTEN permission. 
•	You will never be pressured to do anything or to participate in any research unless you so choose. 

If you wish to be listed on the Roster, please contact us for more information. To become a member of the Roster you will need to fill out a Family History Questionnaire and an Informed Consent Form. If you have any questions, please call the Roster at (317) 274-5744 or email us at slcraig@iupui.edu. 

We appreciate your help in this matter of vital concern to us all.

Source: Indiana University School of Medicine Dept. of Medical & Molecular Genetics website http://www.iupui.edu/~medgen/home2.html 

See information on the following at this website:
•	Pilot Huntington At Risk Observational Study (PHAROS) 
•	Venezuela and Other Studies 
•	Genetic Testing For Huntington's Disease
•	Research Projects

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 (above), provides valuable information about HD.

Section 2	

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). 
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

Section 3	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 which you provide remains within the roster itself. No individuals 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. 

Section 4