What we do

We use patient and stakeholder-engaged research methodology to help ensure the relevance and translation of research conducted in the Center.

Our research focuses on symptom management, behavioral interventions, and rehabilitation treatment that enhances management of chronic conditions.

Funded Projects

RENEW intervention

This is a clinical trial to determine the effects of an energy management program involving trained peer health coaching on symptoms for people with scleroderma. It was funded by the Rheumatology Research Foundation. People with scleroderma interested in seeing if they are eligible for the research study can email Shannen Bolde at sbolde@med.umich.edu.

RENEW App development

Our team developed an App for the RENEW program referenced above. It has all of the content in our web-based materials but allows people to track their health behaviors and receive feedback about their performance on the App. It was funded by the Livewell RERC.

REACH intervention

This small clinical trial examined the effects of an intensive rehabilitation program (in-person treatment sessions with an occupational therapist plus an individualized home exercise program on an App) versus the App alone. It was funded by the National Scleroderma Foundation. The publication can be found here.

REACT intervention

This one-arm clinical trial was designed to test the feasibility and preliminary effects of an in-person occupational therapy intervention for people with scleroderma. It was funded by an NIH Center grant at the University of Alabama. The publication can be found here.

Exergaming

Limited upper extremity (UE) function has impacted daily activities in people with scleroderma. Our team developed a gaming device for scleroderma patients to exercise their hands and arms to improve their UE function. We examined the feasibility and usability of exergaming with the intent of enhancing engagement in home exercise.

Cognitive function

Very little is known about perceived cognitive changes and how these changes impact everyday life in people with scleroderma. We first conducted focus groups to explore how people with scleroderma experience cognitive difficulties. We then conducted an online survey to investigate the associations of perceived cognitive function with symptoms and daily functioning in a larger sample size. This project was funded by a Dan Barry Research Grant at UM (PI Chen; Mentor Murphy).

Collaborations

CRISTAL (Combined Response Index for Scleroderma Trials Assessing Limited SSc)

This international collaboration led by Drs. Dinesh Khanna and Alain Lescoat identified a core set of relevant outcome measures to include in a future combined response index for clinical trial assessment of limited cutaneous systemic sclerosis patients.

Northwestern University

In this collaboration with Drs. John Varga and Yvonne Lee, we identified subgroups of people with scleroderma based on their comorbid symptom presentation using cluster analysis.