Challenging the Huntington Disease Paradigm: Evaluation of Psychosocial Issues in Persons at-risk for Genetic Prion Disease
My name is Madeline Williamson and I am a second-year student in the Genetic Counseling Training Program at Case Western Reserve University based in Cleveland, Ohio, USA.
I am seeking participation in a study to examine the psychosocial experience of being at-risk for a genetic prion disease. Eligible participants for the study will include those who are in one of two groups:
- those who are at-risk for inheriting a mutation based on family history, but have not undergone predictive testing and
- those with a mutation confirmed by predictive testing, but who are not yet symptomatic.
Participants can access the anonymous online survey by visiting the study listings page at www.prionregistry.org. Results of this study will aim to inform the medical community and advocacy organizations on best practices in predictive testing and increase knowledge of the unique psychosocial experience of being at-risk for a genetic prion disease.
