I think that Girija is right on the mark.

The MJFF Patient Advisory Council met in conjunction with the MJFF Scientific Advisory Board late last month in Charlotte, North Carolina. It was an exceptional experience. Each group had their own agenda, but we came together formally to discuss clinical trials recruitment for one breakout session (as reported in PD Online Research). It was an open and frank conversation about the challenges facing both patients and recruiters. (Note: the patient council spent our entire meeting on the topic of clinical trials - the MJFF staff got an earful!)

Clinical trials recruitment has emerged as an area of concern and engagement for MJFF because of the role they are taking in recruiting for their long term (5 year), data-base-building, biomarker study. As they worked to solve the recruitment challenges presented by this one study, they organically understood that what they were learning could, and should, be applied to all clinical trials.

MJFF has talked with PDF about PDTrials and the Learning Institute; I encouraged Debi to look closely at what the Pipeline has accomplished; MJFF is actively seeking patient input in their decision making. Whatever they decide to do, you can be sure it will be innovative, patient friendly, and proactive.

On the last day of the meeting, the patient council listened as the researchers passed the microphone and each stated what they thought was the most important area of PD research right now. The topic of clinical trials was raised again, including patients rights - especially if the trial goes awry in some way. One scientist, a Harvard epidemiologist, said that he felt that the community, society, was responsible to care for patients who give themselves to science for no more reason than altruism. He got some push back - mainly because others talked of legal requirements and university regulations, but I was encouraged that this point of view was spoken so openly and taken seriously.

Although not part of the discussion on the last day, I felt welcome in the room - and at the table. I know first hand that the best researchers in the world are concerned about the things I think they should be concerned about; that they understand the urgency.

I was again reminded, and the researchers clearly vocalized, that MJFF's power to convene is paramount - they were obviously grateful for the opportunity to come together to discuss their research across disciplines and around the table.

I share the concern of organizational duplication, but in this case, more is definitely better.