Your participation is essential to advancing research on FSHD. Participants are sought for a University of Minnesota study on muscle stem cells in FSHD. The principal investigators are Michael Kyba, PhD, and Peter Karachunski, MD.
What is involved? Study participants (FSHD and control individuals) will choose to provide any one or all of the following tissue samples:
- a small muscle biopsy taken with a needle from a muscle in the leg
- skin biopsy
- blood and/or urine sample
What are we trying to find out? What causes FSHD is not well understood. Researchers know that DUX4 dysfunction causes symptoms of FSHD, however they do not know how or why only certain muscles are affected. Researchers have developed a way to study this by looking at muscle in affected and unaffected individuals. We are hopeful that by learning more about what causes FSHD we will be able to develop effective treatments for FSHD.
Will I benefit directly? There is no direct clinical benefit to study participants. This study is aimed at understanding why and how muscle is lost in FSHD. This knowledge is essential to developing a therapy.
How can I participate? This study involves a collection of one or all of the above listed tissue samples from you and a control. For every FSHD participant, we need a corresponding control (unaffected) participant. You can help – if you have a sibling, spouse, loved one, friend, or colleague who would be willing to participate and serve as your control, please do let us know.
Thank you for your support! Isolating and studying cells from controls and individuals with FSHD is critical for advancing our understanding and future treatment of this disease.
*Please contact research assistant Natalya Burlakova at 612-626-4690 or firstname.lastname@example.org
Approved for use by UMN IRB Effective on 5/30/2018 IRB Study Number: STUDY00000409
The Cardiovascular Research & Rehabilitation Laboratory within the Program of Physical Therapy and Rehabilitation Sciences at the University of Minnesota is conducting a research study to understand if the resting metabolic rate and cardiovascular response to exercise are affected by the genetic mutation that causes for facioscapulohumeral muscular dystrophy.
We are seeking volunteers who have been diagnosed with facioscapulohumeral muscular dystrophy to participate in our study. Volunteers must be over the age of 18 and not be pregnant or nursing. This study requires a one-time visit to the lab which will last one and a half hours.
If you are interested in hearing more about this study, please contact the study coordinator. Contact information is included in this letter as well as on the attached flier. If you are interested in learning more about our laboratory and our research please visit our website. We appreciate your consideration and look forward to talking with you further.
Contact Information: Study Coordinator: Mia Larson email@example.com
Manda L Keller-Ross, PhD, DPT, PT