RESPOND-HD: An Examination of Responses to Potential Discrimination from Individuals At Risk for Huntington Disease

The RESPOND-HD observational trial is evaluating issues of potential discrimination as perceived by those persons affected by Huntington disease (HD). The information gathered in this study will allow researchers to examine the experiences of persons who have undergone genetic testing for HD or those persons who are at risk for HD. RESPOND-HD will seek answers to questions such as “How is knowledge used after genetic testing?”, “What experiences occur following genetic testing?” and “Why might outcomes differ in persons undergoing genetic testing?”. Study participants from the PHAROS and PREDICT-HD research trials were being recruited for this study.

Participants for this international, multi-site study were recruited from domestic geographical areas with differing discrimination laws for employment and insurance and from foreign sites where health care systems may be different from those in domestic sites.

Related Link: University of Iowa RESPOND-HD Study Information

last updated: May 2009