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03-15-2010, 09:39 PM | #1 | ||
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I came across this breakout group report on Clinical Trial Recruitment from the MJFF scientific advisory board , suggesting ways the MJFF should get more involved in promoting clinical trial participation.
see: http://www.pdonlineresearch.org/resp...al-recruitment An important issue for sure, and also one that the Parkinson Pipeline Project - a patient advocacy group (pdpipeline.org) and the Parkinson's Disease Foundation have been working on collaboratively for some time. PDF also leads the Steering Committee of PDTrials.org - a coalition of national PD orgs in consultation with medical and patient groups - that provides information on currently recruiting PD trials and encourages more trial participation among PWP. (see http://www.pdtrials.org/en/about_PDtrials_committee) So I'm wondering why duplicate efforts? I hope the message will be that we all need to work together to achieve this goal. and encourage greater cooperation among the orgs and that PWP will also be meaningfully included in any effort or program that affects us. See: Breakout Group: Clinical Trial Recruitment full text at: http://www.pdonlineresearch.org/resp...al-recruitment excerpt-- "Beginning in 2010 MJFF will increase its focus on addressing the issue of clinical study participation. Many clinical studies face significant hurdles in meeting recruitment goals and/or recruiting in a timely fashion. Leveraging the insight and experience of the Foundation’s Scientific Advisory Board, MJFF developed a breakout group to address two issues: 1) identify the challenges clinical studies face in recruiting PD and controls subjects and 2) generate ideas MJFF can implement to improve awareness of clinical studies among the PD population as well as increase subject engagement in clinical studies. ...." (see the full text) |
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