The Scleroderma Foundation has made an appeal for scleroderma patients to participate in a research study focused on assessing an internet self-management program. The request was made by the organization on their Facebook page while the trial will be conducted by the University of Michigan, with the collaboration of the University of New Mexico, Medical University of South Carolina, and Patient-Centered Outcomes Research Institute.
“This Study is a collaborative project with partners (people with scleroderma and stakeholders) designed to refine an internet program for patients with scleroderma and to compare the internet program to an authoritative educational book (Taking Charge of Systemic Sclerosis [TOSS]),” states the description of the study. “During a 16-week comparative effectiveness 16-week randomized controlled trial, the investigators will recruit up to 250 patients who will be randomized to either TOSS or authoritative book for patients, The Scleroderma Book: A Guide for Patients and Families.”
To be eligible to participate in the study, volunteers need to be older than 18, residents in the United States, diagnosed with systemic scleroderma and have basic computer literacy as well as access to a computer with internet and email capacities. Patients of both genders are being enrolled, but healthy volunteers are not needed. The primary outcome measure of the study is “managing Symptoms Scale on the PROMIS® Self-efficacy Short Form 8.”
The 250 participants in the study will be asked to complete a series of questionnaires before the intervention, after it is completed, and six months after the intervention. Volunteers will be randomly assigned to either an internet intervention or to the control group. The former is responsible for evaluating the internet self-management program at home for 16 weeks while the latter will assess an educational book about systemic sclerosis.
The study is expected to be completed by November 2017, and it will be led by the principal investigators Janet Poole from the University of New Mexico, Dinesh Khanna from the University of Michigan, and Richard Silver from the Medical University of South Carolina. Any patients who might be interested in participating in the study or want more information about it should contact Jennifer Serrano at [email protected] or 734- 232-2119.
It may be difficult for scleroderma patients to decide on participating in clinical trials, which is why it’s important to ask the opinion and support of both family and your medical team. Patients can also find out more about the 22 points to consider for clinical trials in systemic sclerosis.
Learn more about scleroderma here: http://bit.ly/learnscleroderma
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