On January 6 and 7, the National Institute of Neurological Disorders and Stroke (NINDS) held the “Parkinson’s Disease 2014: Advancing Research, Improving Lives” conference at the National Institutes of Health (NIH) main campus in Bethesda, Maryland.
The meeting, which was attended by NINDS and other NIH staff, leading researchers, the national Parkinson’s organizations, and members of the Parkinson’s community, including patients, their family members, and caregivers, was designed to inform ongoing and future efforts in Parkinson’s research, particularly assessing “significant challenges” and identifying “the highest priorities” for advancing Parkinson’s research.
Over the two-day conference, researchers and clinicians presented 33 draft recommendations, developed through a series of meetings and discussions among the meeting co-chairs and broken down into the categories of basic, translational, and clinical research. The recommendations highlight areas in which NINDS and the field should consider directing its resources to achieve the greatest impact in addressing treatments and the underlying causes of Parkinson’s. NINDS, assisted by the organizing conference committee, is now expected to incorporate feedback from the conference and revise the recommendations for a final report to be issued to the National Advisory Neurological Disorders and Stroke (NANDS) Council at the end of January.
The afternoon of the second day provided an opportunity for members of the Parkinson’s community to offer public comments on the draft recommendations and the direction of Parkinson’s disease research. Several PAN grassroots leaders, both past and present, were on hand to make an impassioned case for more directly including the patient voice in research and clinical trial design.
PAN CEO Amy Comstock Rick, speaking on behalf of PAN, as well as the National Parkinson Foundation, The Michael J. Fox Foundation, the Parkinson’s Disease Foundation, and the Parkinson Alliance, echoed these sentiments and also recommended that further revision of the draft document:
- Reduce redundancies and narrow the number of recommendations, including separate sections for both shorter-term, action-ready research projects and defined, broader research goals;
- Include more information about how NINDS will fund the priority recommendations; and
- Develop a version of the final recommendations that is more accessible to the lay public and for the larger Parkinson’s disease community, which explains how the recommendations would impact people with Parkinson’s today.
PAN is continuing to evaluate its assessment of the conference and will remain in contact with NINDS leadership and the conference organizing committee.
Recorded Webcast Now Available
If you missed any of the two days of the Parkinson’s planning meeting, a recorded webcast is now available on the NIH website.
Did You Participate?
If you attended the meeting or watched any portion of the two-day conference online, we’d love to hear your feedback. Please send any comments to Jamie Tucker at [email protected].