I've been screaming about a database and longitudinal study since I started. When is the US going to get with the program and provide one that patients can access also. This is way too important to only let the medical staff access. But first they have to get away from assessments and use a damage diagnosis. From the 2011 Canadian Stroke Congress.
page 117 here:
http://www.strokecongress.org/2011/wp-content/uploads/2011/12/CSC_Abstracts.pdf
Background: With the aim of developing partnerships the Rehabilitation Affiliates program was created. The initial study within this framework is the development of a longitudinal stroke recovery database. Its goal is to detail the profile and determinants of recovery after stroke. Unique aspects of the study include: its longitudinal
nature; development of more sensitive measures of recovery; use of comprehensive multidimensional assessments; and, the development of a database of natural recovery. Methods: Rehabilitation Affiliates sites were created at 4 hospitals within Southern Ontario. A total of 24 different tests are used to evaluate the status of
stroke patients across the following domains: risk factors for secondary stroke, physical function, cognition,mood, sleep, lifestyle, brain imaging (CT/MRI) and biomarkers (genomics). Assessments are conducted at admission and discharge from rehabilitation, 6-months, 1- and 2-years post stroke. Results: This longitudinal study is ongoing. As of May 2011, 720 individual visits have been completed for 305 individual participants. A total of 104 (14%) and 40 (6%) participants have completed the year 1 and year 2 assessments, respectively. Of the 305 participants recruited 18% have discontinued from the study due to death (16%), relocation (13%), illness (13%) or choice (58%). At the initial visit 77% of the participants presented as cognitively impaired, 30% of participants had scores that indicated depressive symptoms and 33% of participants were unable to walk. Conclusions: The establishment of clinical partnerships is an essential step in developing this multidimensional standardized database of stroke recovery. A primary focus is to use the data to create new insight into the determinants of stroke recovery. Such information may be important to guide the development of treatments better tailored to individual characteristics. In addition, this database will serve as a comparison when evaluating new and modified
treatment programs conducted within the Rehabilitation Affiliates network.
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