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Accelerating brain health research via online registries

InternetSan Fran­cis­co-based online ‘brain reg­istry’ seeks vol­un­teers to trans­form research (San Jose Mer­cury News):

By vol­un­teer­ing — repeat­ed­ly over time — par­tic­i­pants join a pool of research sub­jects in the new Brain Health Reg­istry, opened Tues­day, for stud­ies on brain dis­eases such as Alzheimer’s and Parkin­son’s, as well as depres­sion, post-trau­mat­ic stress dis­or­der and oth­er neu­ro­log­i­cal ail­ments.

You won’t learn your own scores; that dis­clo­sure could influ­ence your future per­for­mance or trig­ger unwar­rant­ed “freak outs,” said UCS­F’s Dr. Michael Wein­er, founder of the reg­istry and lead inves­ti­ga­tor of the Alzheimer’s Dis­ease Neu­roimag­ing Ini­tia­tive, the world’s largest obser­va­tion­al study of the dis­ease. Rather, you will help speed up research by help­ing cut the time and cost of con­duct­ing clin­i­cal tri­als.

Why not use the Inter­net as a way to enroll in tri­als,” he said, “where vol­un­teers take a few min­utes to take some online neu­ropsy­cho­log­i­cal test to mea­sure brain per­for­mance?”

Hun­dreds of oth­er researchers could share this pooled and updat­ed data­base of patient infor­ma­tion — with par­tic­i­pants’ iden­ti­ties removed — sav­ing the time and expense of new recruit­ment with every new clin­i­cal tri­al.”

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