Parkinson’s disease (PD) is a chronic, progressive movement disorder that affects the lives of at least one-half million patients across the United States. Currently available pharmacological and surgical treatments provide relief for some motor symptoms, but do not halt the ultimate progression of the disease. To inform ongoing and future efforts in PD research, the National Institute of Neurological Disorders and Stroke (NINDS) organized the “Parkinson’s Disease 2014: Advancing Research, Improving Lives” ("PD2014") conference, which took place on January 6-7, 2014. This meeting, the culmination of an iterative process of research recommendation development, was open to the public, and provided an opportunity for neuroscience researchers, physicians, public and private stakeholders, and members of the public to discuss the significant challenges and identify the highest priorities for advancing basic, translational and clinical research on PD.
The final research recommendations that emerged from this meeting were presented to and approved by the National Advisory Neurological Disorders and Stroke (NANDS) Council on January 30, 2014. An overview for the general public is also available.
New research discoveries and technological advances are rapidly changing the way we study Parkinson's Disease (PD), including our understanding of the neurobiological mechanisms involved, identification of pathways to improved treatments, and reconceptualization of clinical trial design. Elucidating the mechanisms responsible for PD and developing and testing effective interventions requires a diverse set of approaches and perspectives spanning clinical, translational, and basic research. The primary goal of the "PD2014" conference was to build consensus on priorities in PD research designed to identify and leverage emergent research opportunities for PD at the National Institute of Neurological Disorders and Stroke (NINDS).
To maximize efficiency and ensure that the meeting resulted in dynamic recommendations that will catalyze advances in PD research, NINDS staff worked closely with a dedicated group of session chairs and panelists to develop preliminary recommendations, which then formed the basis for the discussions at this meeting. Panelists' efforts were informed by a Request for Information (RFI) that solicited broad community input on scientific opportunities and outstanding needs for research and treatment of PD. The independent panels were divided into three topic areas: clinical, translational, and basic research. Working groups from each topic area presented their prioritized research recommendations for consideration and discussion. The meeting was structured so that each of the discussions informed the others, and organizers and participants looked for complementary and unique perspectives. Special attention was given to recommendations that emerged from multiple working groups.
The conference used five complementary approaches to gather input and revise the final recommendations.
- Request for Information: The NINDS published a Request for Information (RFI) in July, 2013 to solicit broad community perspective on scientific opportunities and outstanding needs for research on and treatment of PD.
- Research Recommendation Sessions: The research-related sessions featured presentations and in-depth discussions of the proposed research priorities for each topic area. These sessions included panel discussions with ample time for exchange with the audience, as well as email questions from those participating online.
- Clinical Research: Bringing Emerging Science to People with Parkinson's Disease through Clinical Research
- Translational Research: Building a Translational Pipeline for Parkinson's Disease Therapeutics
- Basic Research: Parkinson's Disease Biology: Moving towards Innovative Treatments
- Public Comment Session: This session provided dedicated time for members of the lay community, including individuals with PD, their family members, and caregivers, to offer feedback on the content and prioritization of the proposed recommendations.
- Stakeholder Session: Conference organizers included a session entitled, "Parkinson's Disease Research Evaluation from a Multi-Stakeholder Perspective." Representatives from academia, industry, government, and non-profit organizations were invited to provide their perspectives on PD research priorities, metrics for evaluating success, and how to advance PD research most effectively.
- Summary Session: The meeting concluded with a Summary Session in which shared themes arising from diverse recommendations were discussed, and all suggested revisions to the proposed research priorities were reviewed publicly.
The meeting also served to foster the continued conversation with partner organizations working towards the common goal of finding causes, improved treatments, and, one day, a cure, for PD. Because the role of the environment in PD deserves additional attention, it will be the focus of a collaborative NIEHS-NINDS workshop in late 2014. In preparation for the workshop, NIEHS and NINDS issued a request for information (responses due October 14, 2014) soliciting input on research to address environmental risks for PD. The dynamic recommendations that result from the NINDS PD2014 and collaborative NIEHS-NINDS conferences will help catalyze the advances in Parkinson’s research at the NIH and beyond.
- Prioritized research recommendations from the National Institute of Neurological Disorders and Stroke Parkinson's Disease 2014 conference.
Sieber BA, Landis S, Koroshetz W, Bateman R, Siderowf A, Galpern WR, Dunlop J, Finkbeiner S, Sutherland M, Wang H, Lee VM, Orr HT, Gwinn K, Ludwig K, Taylor A, Torborg C, Montine TJ; Parkinson's Disease 2014: Advancing Research, Improving Lives Conference Organizing Committee.
Ann Neurol. 2014 Oct;76(4):469-72. doi: 10.1002/ana.24261. Epub 2014 Sep 23.
Implementation of Recommendations
- Notice of Intent to Publish a Funding Opportunity Announcement for NINDS Morris K. Udall Centers of Excellence for Parkinson's Disease Research (P50) First Estimated Application Due Date: January 2015. Contact: Beth-Anne Sieber, PhD.
- Request to Access Parkinson's Disease Related-Biospecimens (X01) PAR-14-340. Applications to this X01 have rolling submission. For the May 2015 Council, the application receipt window is November 13, 2014 - March 12, 2015; future receipt dates apply.Contact: Katrina Gwinn, MD, Marg Sutherland, PhD.
- Parkinson's Disease Biomarker Program (PDBP) Discovery Projects (U01) PAR-NS- 14-259. The purpose of this funding opportunity announcement (FOA) is to support up to three years of study for the discovery, assay optimization, and replication stages required for the development of biological biomarkers for Parkinson's disease (PD). Application Receipt Date(s): September 4, 2014, February 4, 2015, May 4, 2015, September 4, 2015, February 4, 2016, May 4, 2016, by 5:00 PM local time of applicant organization. Contact: Katrina Gwinn, MD, Marg Sutherland, PhD.
- Cooperative Research to Enable and Advance Translational Enterprises (CREATE)
- Funding Drug Development/Discovery Opportunities Available through the NIH Blueprint for Neurotherapeutics Program. Contact: Rebecca Farkas, Ph.D.