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Active Facioscapulohumeral Muscular Dystrophy (FSHD) Studies

study patient sitting on exam table with leg extended while nurse assists

Active Studies

Goal is to hasten therapeutic development and improve care delivery for FSHD. Study is intended to coincide with your doctor’s visits for FSHD.

  • 250 Volunteers needed
  • 6 questionaries’ as well as strength, function and breathing tests
  • Physical exam and genetic testing are offered through the study.
  • Visits are per standard of care (meant to coordinate with FSHD doctor visits). Study will be over 3 years with the hope to expand to a longer timeframe.
  • No cost to participate

For information on the study, view the MOVE FSHD study listing on clinicaltrials.gov.

For more information, please contact:

Michaela Walker
913-945-9920
mwalker20@kumc.edu

Want to give back but don’t qualify for any other studies? Don’t worry, you can continue advancing the cause by joining the largest FSHD registry in the world from the comfort of your own home. Members of the registry are kept up to date on the current clinical trials for FSHD.

Access forms to Join the Registry

For more information, please contact:

Leann Lewis- University of Rochester Medical Center
Phone: 585.275.7680
Leann_lewis@urmc.rochester.edu

The overall aim of this study is to hasten drug development for Facioscapulohumeral Muscular Dystrophy (FSHD) by validating new clinical outcome assessments (COAs) and refining trial planning strategies.

We are seeking 220 volunteers to participate in this research study.

  • You will answer 7 health-related questionnaires and undergo physical assessments that test strength and motor function.
  • A physical exam will be completed along with genetic testing and a DEXA scan.
  • There are a total of 5 visits over 18 months.

There is no cost to participate in this study.

Funds are available to aid with travel expenses.

For more information, please contact:

Michaela Walker
Project Manager
913-945-9920
mwalker20@kumc.edu

Leann Lewis- University of Rochester Medical Center
Phone: 585.275.7680
Leann_lewis@urmc.rochester.edu

Mary Yep- Kennedy Krieger Institute
Phone: 443.923.7318
Yep@kennedykrieger.org

Dianne DeGuzman- University of California Los Angeles
Phone: 310.825.3264
ddeguzman@mednet.ucla.edu

Tabitha Alexander- The Ohio State University
Phone: 614.293.6953
Tabitha.alexander@osumc.edu

Laura Sissons-Ross- University of Washington
Phone: 206.543.0081
lsissons@uw.edu

Sarah Moldt- University of Utah
Phone: 801.585.9399
Sarah.moldt@hsc.utah.edu

Liz Diaz-Virginia Commonwealth University
Phone: 804.628.6480
Liz.diaz@vcuhealth.org

Principal Investigators:

  • Jeffrey Statland, M.D. - University of Kansas Medical Center
  • Rabi Tawil, M.D. - University of Rochester Medical Center
  • Leo Wang, M.D. - University of Washington
  • Kathryn Wagner, M.D. - Kennedy Krieger Institute
  • Perry Shieh, M.D. - University of California Los Angeles
  • Samantha LoRusso, M.D. - The Ohio State University
  • Russell Butterfield, M.D. - University of Utah
  • Nicholas Johnson, M.D. - Virginia Commonwealth University

The primary goal of this proposal is to hasten drug development in FSHD by validating the muscle MRI and biomarkers and to explore cohort characteristics useful for determining eligibility criteria to improve trial efficiency.

We are seeking 36 volunteers to participate in this research study.

  • You will answer 1 health related questionnaires and undergo physical assessments that test strength and motor function.
  • A physical exam will be completed along with genetic testing, an MRI (at each visit) and a muscle biopsy (Visit 1 only).
  • There is a total of 3 visits over 36 months.

There is no cost to participate in this study.

Funds are available to aid with travel expenses.

For more information, please contact:

Michaela Walker -University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9922
mwalker20@kumc.edu

Leann Lewis- University of Rochester Medical Center
Phone: 585.275.7680
Leann_lewis@urmc.rochester.edu

Christopher Budech- University of Washington
Phone: 206.987.6022
christopher.budech@seattlechildrens.org

Principal Investigators:

  • Jeffrey Statland, MD- University of Kansas Medical Center
  • Rabi Tawil, MD- University of Rochester Medical Center
  • Leo Wang, MD- University of Washington

Interested in Research?

Email us your questions to learn more!

Contact Us

Events

Upcoming Walk and Roll FSHD Fundraisers | FSHD Society
View dates and registration information

FSHD Clinical Trial Research Network

Contact Us

Michaela Walker
Project Manager
913-945-9920
mwalker20@kumc.edu