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Vol. LXVI, No. 6
March 14, 2014
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‘Cure for Tomorrow, Care for Today’
NINDS Holds Conference to Set Parkinson’s Research Agenda

PD conference scientific chair Dr. Thomas Montine

PD conference scientific chair Dr. Thomas Montine

NINDS recently held a 2-day conference, “Parkinson’s Disease 2014: Advancing Research, Improving Lives,” bringing together leading researchers, physicians, patients and caregivers to set priorities for Parkinson’s disease (PD) research.

PD affects the lives of at least half a million people across the United States. It is a chronic, progressive, neurodegenerative condition and is one of the most common disorders occurring later in life. Currently available treatments provide relief from some symptoms, but do not halt the ultimate progression of the disease.

“The scientific community must constantly scan the horizon for new scientific opportunities in Parkinson’s disease, assess our progress rigorously and be strategic in how we invest our resources,” said NINDS director Dr. Story Landis in opening remarks.

The goals of the meeting, which convened recently at Natcher Conference Center, were to: assess significant research challenges, gather input from the scientific and lay communities (including people with PD, their caregivers, family members and advocates) and identify a set of recommendations to advance PD research and treatment. These recommendations could then be used to inform the efforts of NINDS as well as PD investigators and PD organizations in their quest to reduce the burden of illness due to Parkinson’s.

PD2014 featured more than 30 speakers including Dr. Karen Marder (l) and Dr. Werner Poewe. NINDS director Dr. Story Landis explains goals of the PD2014 conference.

PD2014 featured more than 30 speakers including Dr. Karen Marder (l) and Dr. Werner Poewe.

NINDS director Dr. Story Landis explains goals of the PD2014 conference.

Despite weather challenges on both days, which led to travel problems for some speakers, presentations ignited lively discussion by attendees both in person and online.

“This is not the usual scientific symposium,” said conference scientific chair Dr. Thomas Montine of the University of Washington. “We view you as the next panel of experts. Our expertise varies. Some of us are experts from coping with this disease every day. Some of us are experts from caring for loved ones who have or had Parkinson’s disease. Some of us are advocates for those with Parkinson’s disease or their health care providers. Many of us here are physicians or scientists in government, industry or university...Lots of us have multiple roles.”

The conference was divided into three panels to consider clinical, translational and basic research.

The conference was divided into three panels to consider clinical, translational and basic research.

Photos: Bill Branson

“The recommendations presented at this meeting range from understanding the biological causes of PD to turning that understanding into interventions,” said Landis. “To test potential interventions as expeditiously as possible, we must reconceptualize clinical trial design. In brief, it’s planning across the entire PD research spectrum.”

More than 200 people attended the conference; several hundred joined via NIH videocast. The program featured more than 30 speakers and was divided into three panels to consider clinical, translational and basic research.

Presentations covered such topics as opportunities for innovation in clinical research and trial design, improving outcome measures in PD research, building a translational pipeline for PD therapeutics (including target identification and validation and development of innovative treatments), understanding the neurobiology and neuropathology of disease and the potential of neural circuit modification for understanding and treating Parkinson’s.

Day one concluded with a forum of advocacy experts moderated by Dr. Amy Comstock Rick, CEO of the Parkinson’s Action Network.

Day one concluded with a forum of advocacy experts moderated by Dr. Amy Comstock Rick, CEO of the Parkinson’s Action Network.

Overarching themes included:

  • Developing precision medicine to match the molecular and clinical heterogeneity of PD
  • Deepening our understanding of the basis of variation among individuals with PD (with respect to response to therapies, racial and ethnic background and impact of symptoms on quality of life)
  • Developing experimental models to investigate normal and abnormal functions of PD gene products and characterizing high-dimensional data—spanning from genomics to electronic medical records and promoting their analyses by multi-specialty teams
  • Filling critical gaps in our knowledge with innovative technologies
  • Supporting key infrastructure to fuel discovery including repositories with standardized data and biospecimens and organized data-sharing from clinical and experimental studies to promote facile comparison.
PD2014 day two featured a public comments session during which several members of the PD community addressed the proposed recommendations. PD2014 day two featured a public comments session during which several members of the PD community addressed the proposed recommendations.
PD2014 day two featured a public comments session during which several members of the PD community addressed the proposed recommendations.

The first day ended with a forum, “PD Research Evaluation: A Multi-Stakeholder Perspective,” which featured a presentation on research evaluation by Dr. Ann Bonham of the Association of American Medical Colleges.

On the second day, after panel discussions, 11 members of the PD community commented on the proposed recommendations. “A theme we heard from the public comment session is the need for a cure for tomorrow but care for today,” said Montine, summarizing the session.

A conference report on the recommendations was presented to NINDS’s National Advisory Neurological Disorders and Stroke Council at the end of January. Watch the NINDS web site for the final draft of PD2014 research recommendations.


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