Hello All,
Is anyone aware of getting the test for HD done without going though one of the HDSA centers of excellence? Ie. any drs/clinics that could draw blood and send in for testing?
Thank you

For my phd, his Neuro did the test at University Hospitals of Cleveland medical center. Because his symptoms were pretty pronounced and because we were playing a time game with his Employer and FMLA they didn't make him go through counceling. Luckily his Neuro knew that we needed to have a diagnosis or risk my phd being fired from his job and losing his disability insurance. At the time UH wasn't a center of excellence but considering becoming one in the future.

In our case a general physician gave us a referral to a local neurologist who submitted a blood sample to a lab who performed the test. No consulting and no COE. I've heard about some neurologists who still insist that genetic counseling take place but apparently not all do.

Steve

My daughter also had the test ordered by her MD. The blood was drawn the same week and counseling was never even mentioned. At the time we had never even heard of a COE. My understanding is that any doctor can order the test.

My testing came as a result of my symptoms. It was not at a COE and the Neurologist stated he had to counsel me and this was all within this particular visit. I ask for my results by phone (didn't know what HD really was) and I did get them by phone. Mind you, it did all take place in a professional manner. Personally I didn't have very good luck at the COE I visited but I understand experiences can be different everywhere.
Mike

Neurologist had someone come to the house and draw the blood. Two weeks later results were phoned to us.

I looked up teaching hospitals in the area that had neurological sections. Most had a specific section that addresses HD. I contacted them about testing and one was even fine about testing anonymously. There was one meeting that consisted of a neuro exam/physical exam and counceling back-to-back. In the second meeting, I got my results.