Monday, April 20, 2009
 
 

     

Huntington Project Web Site Closing May 1, 2009

Dear Huntington Project Web Site Visitors,

The Huntington Project was created in 2003 with specific aims in mind:

  1. increase communication within the community
  2. facilitate opportunities for clinical research (COHORT)
  3. provide a forum to evaluate research initiatives (SET-HD)

Happily, the mechanisms for sustaining these processes are in place and are now operating independently. Therefore, we will close the Huntington Project web site in early May 2009.

Thank you for your support and interest.

Sincerely,
(on behalf of the Huntington Project Communications Group)

Family History Unification
 

Integrating family history information with data obtained in clinical trials and from biological specimens will greatly increase the usefulness of those data. The Huntington Project will establish a protocol for collecting and sharing family history information, taking into consideration the following:

  • Protecting the privacy of those who provide information as well as their family members
  • Determining the relevant family history information that could prove valuable in future research
  • Developing a uniform questionnaire to ensure consistency of data gathered
  • Developing procedures and safeguards for sharing family history information with research teams conducting clinical trials or analyzing biological specimens
  • Encouraging those in the HD community to participate by contributing family history information
  • Encouraging research that will glean important information about HD through the study of family histories
     
Copyright 2003,2004 by Huntington Project