Helping Patients With a Rare Disorder to Restore Arm Function
Dr. Susan Murphy heard about the REACT Center Pilot Funding opportunity via NEXtNet, a national network for exercise clinical trials run out of UAB’s Center for Exercise Medicine. As director of clinical trials in the Department of Physical Medicine and Rehabilitation at the University of Michigan, with a role in the University of Texas Medical Branch’s Center for Large Data Research and Data Sharing (CLDR), she says she was pleased to learn about REACT.
“Rehabilitation research is really my passion—this study provides an opportunity to build evidence in an area in a rare, debilitating disease where people are spread out geographically,” Murphy says. Her project will create and test a standardized treatment protocol for therapy for individuals with scleroderma.
Scleroderma is a rare autoimmune disorder originating in the lungs, which causes skin tightening, “frozen” joints, mobility loss, and scarring of internal organs, in addition to breathing problems. The University of Michigan Scleroderma Center is well-established and sees patients from around the region. “This is a new area of research for me,” Murphy says. “I was approached by a colleague, Dr. Dinesh Khanna, who is a leading expert in scleroderma—we work on an initiative within our medical school to build clinical trials infrastructure. He approached me about writing the pilot and said we could use the local patient population.”
The idea for the project stemmed in part from the distances patients travel to receive treatment, which means “specialists in scleroderma don’t get a lot of opportunity to conduct research with these individuals because they have to travel so far.” Murphy says locally they have enough patients to conduct an eight-week program designed to create a standardized treatment protocol, which can then be tested at other sites nationwide.
“It’s really an exciting opportunity for us to build evidence and also collaborate with UAB and other sites,” Murphy says.
In rehabilitation in general there are not a lot of vetted evidence-based practice protocols, Murphy says, especially in rare disorders. Her pilot project focuses on the upper extremities—hand contractures, and “frozen” joints at the elbow or shoulder. Current therapeutic treatments include preparing the limb for treatment with hot packs and paraffin dips to increase mobility, and arm mobility exercises, taking the arm through a range of motion to increase flexibility. This allows patients to transition from passive to more active activities such as reaching, and from in-clinic to home therapy. Murphy’s study will look at these methods in addition to therapeutic massage, both manual and by a machine called the Physiotouch that lifts the skin and increases blood flow (which may prove particularly effective on scar tissue).
Susan Murphy, ScD OTR/L is an associate professor in the Department of Physical Medicine and Rehabilitation, University of Michigan.