Professor Julie Bernhardt x Co-Head, Stroke Division Director, AVERT Early Intervention Research Program, Australia Director, Centre of Research Excellence.

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Presentation transcript:

Professor Julie Bernhardt x Co-Head, Stroke Division Director, AVERT Early Intervention Research Program, Australia Director, Centre of Research Excellence for Brain Recovery and Rehabilitation, Australia Neurological Rehabilitation Clinical Trials Special Interest Group Professor Bruce Dobkin Head, Professor of Neurology Program Director, UCLA Neurologic Rehabilitation and Research Program Director, UCLA Stroke Centre UCLA/Geffen School of Medicine, USA

SIG Aims Build international trials collaboration Website development to foster collaboration and communication within the group Provide opportunities for sharing trials

Membership Current members: 128 Countries: 29 Australia, Austria, Brazil, Canada, Denmark, Egypt, Finland, France, Germany, Hong Kong, India, Indonesia, Italy, Korea, Mexico, Netherlands, New Zealand, Norway, Romania, Saudi Arabia, Singapore, South Africa, Sweden, Switzerland, Taiwan, Turkey, U.K, U.S.A, U.A.E.

Huge training need Members interested in training in: - Clinical trials development - Clinical trials management: 95%

SIG Meeting, Istanbul April 2014 Summary – What members want -Clinical trials overview -Clinical protocols for low resource countries -Training in clinical trials methodology -SIRRACT Trial example: - use model for further research or simple questions - trial participants – patients felt valued, influenced clinical practice & led to development of specialist rehab unit -Advertise trials looking for recruitment sites -Opportunities for collaboration and to join trials -Identify champions in each country to help build new trials -Identify people willing to be mentors to others -Outcome measures & minimum standards

SIG Meeting, Istanbul April 2014 Summary – Building an international trial group participation -Medics have agreed on mRS, why can’t we? -Work together with other SIGs -Longitudinal observational studies, funding and more data collection -Normative data for patients with different stages of disease -Measurement of usual care -Goal assessment based on ICF -Need co-ordinating centres (maybe WCNR funding) -Start small, maybe not all centres can contribute -Look at epidemiologists, other groups for learnings -Establish a task force, need champions -Modular approach based on funding available

2015 plans Member survey – educational resources about clinical trials available in their country – Compile and make available – Consider development of online short course for members or extended workshop for future WFNR meetings Form the ‘task force’ for trial development with aim of presenting design to members in Phile 2016 Core trial outcomes workshop in the next 2 years