Developing a research agenda on exercise and physical activity for people with limb loss in Canada.

PURPOSE: There is a lack of high-quality evidence about the effects of exercise or physical activity interventions for adults with lower limb amputations (LLAs). A planning meeting involving stakeholders (i.e., people with LLA, community advocates, health care providers, researchers) was organized to identify key research priorities related to exercise and physical activity for people with LLAs. METHODS: We used a collaborative prioritized planning process with a pre-meeting survey and 2-day virtual meeting that included: identification and prioritization of challenges or gaps; identification and consolidation of solutions; and action planning. This process integrated a modified Delphi approach, including anonymous feedback in two surveys. RESULTS: Thirty-five stakeholders participated. Six challenges related to exercise and physical activity for people with LLA were prioritized. One solution was prioritized for each challenge. After consolidation of solutions, participants developed five research action plans for research including: developing an on-line interface; developing and evaluating peer-support programs to support physical activity; examining integration of people with LLA into cardiac rehabilitation; development and evaluation of health provider education; and determining priority outcomes related to physical activity and exercise. CONCLUSIONS: This collaborative process resulted in an action plan for amputation research and fostered collaborations to move identified priorities into action.IMPLICATIONS FOR REHABILITATIONLower limb amputations impact mobility leading to lower levels of physical activity.There are research gaps in our understanding of the effects of exercise or physical activity interventions for adults with lower limb amputations.Through a collaborative planning process, participants prioritized research directions on physical activity and exercise for people with LLA to advance research in the field.Action plans for research focused on developing online resources, peer support, cardiac rehabilitation for people with LLA, health provider education and determining priority outcomes related to physical activity and exercise.

Effectiveness of a web-based protocol for the screening and phenotyping of individuals with Tourette syndrome for genetic studies.

Genome-wide association studies (GWAS) and other emerging technologies offer great promise for the identification of genetic risk factors for complex psychiatric disorders, yet such studies are constrained by the need for large sample sizes. Web-based collection offers a relatively untapped resource for increasing participant recruitment. Therefore, we developed and implemented a novel web-based screening and phenotyping protocol for genetic studies of Tourette syndrome (TS), a childhood-onset neuropsychiatric disorder characterized by motor and vocal tics. Participants were recruited over a 13-month period through the membership of the Tourette Syndrome Association (TSA; n = 28,878). Of the TSA members contacted, 4.3% (1,242) initiated the questionnaire, and 79.5% (987) of these were enrollment eligible. 63.9% (631) of enrolled participants completed the study by submitting phenotypic data and blood specimens. Age was the only variable that predicted study completion; children and young adults were significantly less likely to be study completers than adults 26 and older. Compared to a clinic-based study conducted over the same time period, the web-based method yielded a 60% larger sample. Web-based participants were older and more often female; otherwise, the sample characteristics did not differ significantly. TS diagnoses based on the web-screen demonstrated 100% accuracy compared to those derived from in-depth clinical interviews. Our results suggest that a web-based approach is effective for increasing the sample size for genetic studies of a relatively rare disorder and that our web-based screen is valid for diagnosing TS. Findings from this study should aid in the development of web-based protocols for other disorders.