And now… a BIG ANNOUNCEMENT! A few of you may have caught the sneak preview at the HDSA convention, so just pretend to be surprised, okay?
As most of you know, Kids-HD is a research study that focuses on young people who are at-risk for HD. This means any kid with a parent (or grandparent, if their folks haven’t been tested) is eligible to come participate with us – long before anyone knows their gene status. The Kids-HD study has actually been around for a pretty long time -- since 2005. During this whole time talking to families about the study, we’ve met kids who already have symptoms of HD. Some of them have even been diagnosed with JHD. Since the Kids-HD study is for at-risk kids, we couldn’t bring symptomatic kiddos in to participate. This was a huge bummer.
But no more! We are SO PROUD to announce a separate sister study just for young people already having symptoms: Kids-JHD.
We wanted to include a clinic-like experience for study participants and their families, so Kids-JHD is a little different from Kids-HD. For starters, Kids-JHD participation takes two days instead of just one so that the scheduling and pace of tests and exams can be more tailored for each young person’s needs and tolerance level. Also, the Kids-JHD study includes a second day to provide consultations with three child specialists familiar with JHD: a neurologist, a psychiatrist, and a neuropsychologist. These doctors will review the research testing, perform their own evaluations, and discuss results with the participants and their families. They will write reports and consult with providers back home at the family’s request. Like Kids-HD, Kids-JHD covers travel expenses and all study procedures – this includes consultations.
The contact people are the same for Kids-JHD, so let us have it! We can’t wait to hear your comments and answer your questions!
Much thanks to the select few who helped us get Kids-JHD up and running over the last year by coming to participate and sharing your thoughts about the experience – you know who you are! <3