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Active Facioscapulohumeral Muscular Dystrophy (FSHD) Studies

patient sitting on exam table, Photo by Marlon Lara on Unsplash

Clinical Trial Readiness to Solve Barriers to Drug Development in FSHD "ReSolve FSHD"

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:

Kiley Higgs-University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9922
Ksims2@kumc.edu

Katie Roath- University of Kansas Medical Center
Phone: 913.945.9928
kroath@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

Principle Investigators:

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

Biomarker Validation Study in FSHD "BiLat FSHD"

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:

Kiley Higgs-University of Kansas Medical Center
Study Project Manager
Phone: 913.945.9922
Ksims2@kumc.edu

Katie Roath- University of Kansas Medical Center
Phone: 913.945.9928
kroath@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
Last modified: Aug 06, 2019
Events

Virtual Rock & Roll to Cure FSHD
September 12, 2020
virtual

ReSolve Year 4 Investigator Meeting
October 23, 2020

FSHD Society Sequester Camp
Every Thursday, 12 p.m. CST/1 p.m. EST
more information

Clinical Trials
Contact Us

Kiley Higgs
Project Manager
913-945-9922
ksims2@kumc.edu

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