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Headed to NIH tomorrow
Registered: 05-07-2012
Posts: 29
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I have been selected for the clinical trial on "Effect of Functional Exercise in Patients
with Spinal and Bulbar Muscular Atrophy". See here for description:
NIH site
Headed to the NIH tomorrow. Has anymore else on here been through this yet? I'd like to
know what to expect.
Registered: 08-02-2009
Posts: 206
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I have been a subject in that trial, and I recommend the experience highly to anyone who meets the inclusion criteria. Everyone at NIH is very nice, and you will receive free medical testing and consultations with a neurologist, physiatrist, physical therapist, etc., with plenty of opportunities to ask questions. None of the testing is invasive or painful in any way.

It would cost thousands if you had to pay for all the medical work out-of-pocket, assuming you could even get an appointment to see these KD experts. Also, the study pays for your transportation and hotel room, including mileage if you drive there.

You will be assigned to one of two groups and sent home to do your exercise or stretching program for 12 weeks, after which you will come back for another round of tests.

It is a real privilege to participate and again I recommend it highly to anyone who meets the inclusion criteria for the study.
Registered: 05-07-2012
Posts: 29
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I went and was very glad I did. Everyone there was great. The doctors, nurses, therapists, etc. all are very familiar with Kennedy's Disease and have seen dozens of patients with it. The first day (Monday) they put me through tests all day Blood tests, strength and balance tests, an EKG and others. They told me I qualified for the trial, but I am not supposed to reveal what group I am in yet. On Tuesday, they spent the morning showing me the exercises or stretching I am supposed to do and how to email videos and reports to them. They also answered a lot of questions for my wife and me. I'm looking forward to going back in January.
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Location: Vancouver Island, British Columbia
Registered: 10-08-2006
Posts: 58
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I'm so glad to hear your first experience there was so positive! Good luck and thank you for participating in the study! Smiler
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