University Hasselt, Belgium: towards a shared data repository
Title: Towards a shared data repository to enhance the standards of rehabilitation in MS: feasibility, capacity building and proof-of-concept on exercise therapy & mobility measures
Principal Investigator: Peter Feys, Ph.D.
Institution: University Hasselt
Amount Awarded: €74,985
Exercise therapy is a potentially effective treatment for people with MS. However, despite an explosion of research on physical rehabilitation and exercise, it is not yet clear whether beneficial effects are equally present in progressive compared to relapsing-remitting type of MS. One issue has been the small size of studies. This project proposes to prepare the construction of a large, shared data repository that would be established by retrieving data from published studies and new data entered by clinical and research centers. This would enable researchers to investigate questions on the effects of specific exercise interventions and settings, or on the appropriateness of different outcome measures. Ultimately, this will lead to improved standards in MS rehabilitation practice.
What does this mean for people living with progressive MS?
This endeavor could enhance the ability to determine the best rehabilitation and exercise interventions for people with progressive MS, and provide the data needed to advocate for its widespread use to improve lives.
Dr. Feys reviewed existing MS registries to gain insight into data contributors, types of data, procedures to collect data, and management. This knowledge led to the development of a questionnaire which was launched to a broad, multi-disciplinary audience to further investigate the barriers and facilitators of an international MS rehabilitation repository.
Data on the effect of exercise therapy on physical function for people with relapsing-remitting MS compared to people primary and secondary progressive MS has been shared. A website has been created to share information and project activity and a twitter account has been activated.
Principal Investigator: Peter Feys
Peter Feys, PhD, received a Master’s degree in physiotherapy and PhD in rehabilitation services and physiotherapy from Catholic University Leuven. He worked as clinical therapist in Bürgerspital Solothurn (CH), the University Hospitals Leuven and the National MS Centre in Melsbroek. He has been conducting MS research since 1998, funded by European projects, WOMS (affiliated to the Flemish MS Society) and the Fund for Scientific Research, Flanders. He is part of the REVAL rehabilitation research institute within BIOMED. Internationally, he is president of R.I.M.S. (stands for Rehabilitation in MS, an European network of best practice and research, www.euRIMS.org), after being chairman of the Special Interest Group on Mobility from 2008 till 2011, and serves on many other collaborative committees. He has published over 60 peer reviewed articles in international neurological and rehabilitation journals.
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