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Old 10-24-2013, 08:19 AM
johnt johnt is offline
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Join Date: Apr 2009
Location: Stafford, UK
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15 yr Member
johnt johnt is offline
Senior Member
 
Join Date: Apr 2009
Location: Stafford, UK
Posts: 1,059
15 yr Member
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Thanks for your report.

Tupelo3 mentions the difficulty that many researchers have in finding PwP to participate in trials. In my opinion, reasons for not participating are many and varied, so there is no one answer. But the points worth looking at include:

- Run the trial as much for the convenience of the PwP as for the staff.

- To some extent the number of people wishing to enter a trial reflects people's perception of the promise of the therapy. Low uptake is in a sense a vote of no confidence; this may be unfair, especially to early life-cycle trials, but it could reflect poor communication or low relevance.

- Do as much of the testing at home as possible.

- Promise to continue access to a drug for those who want it regardless of the outcome of the trial (we are all different so some drugs can be beneficial to some but bad for others. I suspect that this was the case with GDNF);

- Find alternatives to having some patients taking a placebo. (It's not perfect, but in many situations placebo figures can be shared between trials.)

- Get more information out of each participant: high frequency testing.

- Careful trial design so as to maximise the amount of information gained.

John
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"Thanks for this!" says:
lab rat (10-25-2013)