Volunteers who are 18 to 55 years of age with FSHD are needed for a study to evaluate functional mobility. The principal investigator is Jay Han, MD, of the University of California Irvine Department of Physical Medicine and Rehabilitation. The purpose of the study is to investigate a new method to measure functional mobility in FSHD population in preparation for future therapeutic clinical trials.
About the Study
- Involves up to 2 visits to the Acute Rehab Unit or outpatient PT/OT clinic at University of California, Irvine Medical Center in Orange, CA
- Up to 1 hour for each visit
- $200 compensation after completion of the study
- No cost to you or insurance.
If interested, please contact:
Vicky Chan, DPT
Phone: 949-447-8339
Email: vchan2@uci.edu
And ask about the “The FSHD Study”
Download flyer here.
I’d love to participate but I’m 64. Diagnosed at 54, after initial on-set at 51, i’ve Done very well by doing physical therapy. I live alone, grocery shop, drive, walk for exercise and teach. I do not use a wheelchair or any supports except a Philadelphia collar when I drive.
Thank you for asking,
Margaret Mueller
Roseville, CA
Hi Margaret,
Thank you very much for your interest in our study. Unfortunately, we are recruiting study participants with FSHD between the age of 18 to 55 years old. It is very nice to hear that you are staying active. We will keep you posted if new studies come up.
Thank you again,
Vicky.
What does this study include? What’s the process?
Hi Sean:
Thank you very much for your interest in our study. We are investigating a new outcome measure of functional mobility for FSHD population. There are two visits for the study and each visit lasts about 1 to 1.5 hours. Please send us an email and we can discuss more in details.
We look forward to hearing from you.
Thanks so much!
Vicky.
What strength deficits should a patient have to join this study?
Please contact the study coordinator for an answer to your question.
Hi Rose:
Thank you very much for your interest in our study.
We would evaluate your functional mobility and strength of your arms and legs to determine your eligibility for the study. We are recruiting a wide range of strength and functional mobility at the moment. Please feel free to contact me directly and we can discuss more in details.
We look forward to hearing from you.
Thank you again,
Vicky.
I just finished participating in this study as their very first volunteer patient, visiting on the 14th and 21st of August 2018. It was very easy and straightforward. Vicky Chan, and the medical student, Tony Nguyen, working with her, are wonderful! UCI Orange has free valet parking at the site that is easy to use.
I AM 23 YEARS OLD. I LIVE IN TURKEY. PHYSICAL ACTIVITIES SELF CONSTRUCTION. CAN I JOIN
Unfortunately, you need to live close enough to make two visits to the lab.
My name is Jeff Brooks I live in Utah l would love to volunteer problem is I would have to drive and the $200 will only cover the gas I would need a hotel for the night and then drive back. Please let me know what you think.
Thank-You
Jeff
Too bad you are a 4 hour drive from me. If you come to Tucson, I know 4 people for your study.
Road trip?
IS there a reason you don’t post the consent document or at least the portions defining and describing the study?
There’s a link to the page describing the study. Here’s that info. You should contact Vicky Chan if interested. We don’t post the consent form because she didn’t give it to us. I’ve seen them and they can be long and require the study coordinator’s help to understand.
About the Study
– Involves up to 2 visits to the Acute Rehab Unit or outpatient PT/OT clinic at University of California, Irvine Medical Center in Orange, CA
– Up to 1 hour for each visit
– $200 compensation after completion of the study
– No cost to you or insurance.
If interested, please contact:
Vicky Chan, DPT
Phone: 949-447-8339
Email: vchan2@uci.edu
And ask about the “The FSHD Study”
Hi I’m 51 with FSHD…. I live iin McKinney, Texas…love to help…
HI, I’m a 57 yo male and was diagnosed approximately 10 years ago. I actually thought I was a one-off as I had never seen anybody with my physical symptoms!
Sadly, my 20 yo son has also been diagnosed, but I am encouraged for him by all the research that is going on. We would love to take part in any trial, and in fact we could be a unique study comparing a 57 yo with a 20 yo. Unfortunately, we live in the UK, and haven’t found any meaningful support because of its rarity over here. All I was told, and indeed my son, was that there is nothing that can be done. I don’t expect miracles but if we can help in any way, it would be a pleasure.
Join the FSHD UK registry. The data you provide is important for research and being in the registry also ensures you’ll be notified about studies in the UK. We have a global scope and anticipate international trials in the future, so be sure to read our emails!