To understand more about the recovery after stroke, we need to study stroke survivors. We need to track their long-term progress, and to conduct studies of new interventions suggested by research. This means we need to identify survivors who want to participate in studies something which can be more difficult and time consuming than it sounds.
To meet this challenge, the CSR has developed The Rehab Affiliates Program. This initiative identifies and recruits stroke survivors at five major rehab centres who are interested in participating in research.
Through the program, some clinicians at partner sites join the CSR staff on a part-time basis, freeing some of their time for research, and giving CSR an invaluable on site presence. Because clinicians at partner sites know the patients and other staff members, they are ideally placed to identify survivors who are interested in helping recovery research.
Survivors who volunteer to take part in CSR research are given a comprehensive baseline assessment, which evaluates their clinical, physical, cognitive, mood and caregiver status. Then, they are carefully monitored for several years, and the trajectory of their recovery is recorded. Data from this part of the Rehab Affiliates Program is yielding valuable insights on stroke recovery over the long term.
Program provides pool of potential participants in stroke recovery studies
The program also has a second, very important component: it provides a “ready made” pool of survivors who may be interested in participating in studies of specific interventions. Finding study participants isn’t always easy. In fact, finding and assessing candidates for studies can take months, and can slow down important trials, delaying the introduction of effective new therapies.
The Rehab Affiliates Program can speed up the study process. Because everyone in the program has already been evaluated and has expressed an interest in research, scientists have a ready-made infrastructure with standardized data. . We hope that, in the long term, the program will allow us to move important interventions from the research level to the clinic from bench to bedside more quickly than before.
We have already enrolled over 400 stroke survivors in the program. The staff at our partner sites and the dedicated survivors who have joined the initiative, are helping us create a very important scientific resource – one that will really make a difference to researchers as they look for new and better ways to help people recover from stroke