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Parkinson's Disease Coordinating Committee Minutes

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2003 Event Series Calendar

Parkinson's Disease Coordinating Committee Participant List

PDCC MINUTES

June 3, 2003

Dr. Penn opened the meeting with welcoming remarks, and mentioned that some of our latest goals and activities have centered on development/expansion of Udall centers and building collaborations with the voluntary community.

PD Matrix Updates were then introduced for comments and discussion.

  • International Meeting for PD (a multidisciplinary meeting covering basic, translational, clinical and patient care) was discussed. There was great enthusiasm after the NYAS meeting on PD that was sponsored by the DOD. The NINDS is working with the voluntary community, who will be primarily responsible for planning this meeting. Concerns expressed by the group would be timing with other big meetings, for example the Tri-annual Meeting on Neural Transplantation, the AD World Congress next July, the Seville meeting, etc. A conference call will be held on Monday with key supporters and advisors of the meeting. Robin Elliott of the PDF will be the point person from the advocacy community. Cindy, Stephen and Karl will also participate.
  • DNA Repository: Katrina discussed the Human Genetics Repository contract awarded to Coriell. Dr. Hoffer described NIDA intramural efforts in gene discovery, particularly in collaboration with Sweden and Taiwan. Katrina will be following up on this.
  • Udall Centers: The Udall centers program was discussed at length. There are currently 3 planning efforts going on for expansion and incorporation of more clinically-centered research for these centers, as well as meeting goals for core resources as outlined in the matrix.
    • The NINDS will announce shortly in the NIH guide that the cap on Udall centers will be expanded for clinical components only. These will be accepted as supplements or as components in competitive renewals. It was noted that the AD centers require a Clinical Core and a Data Management core (designed to mesh with National Alzheimer's Coordinating Center, NACC), and Pathology and education cores are optional.
    • The NINDS is also considering an RFA for a Data Coordinating Center. As follow up to the March 1 advisory meeting, a Minimum Data Set (MDS) is being developed as a tentative guideline to accompany the RFA. It was noted the NIA is also developing a PD MDS which our committee will follow up on. The next NIA centers meeting will be held in San Francisco in the fall.
    • The Annual Udall Centers meeting will be held on Sept. 10-11, 2003, at Duke University (hosted by Jeff Vance). Lynn Morin will be coordinating details. Members of the NIEHS consortium are invited as well; all 3 NIEHS centers are now off the ground and are primarily focused on epidemiology and the role of pesticides in PD. They will be working together to pool data across centers and are meeting in late July in Napa Valley (hosted by Bill Langston). The scientific topic will be proteasomal function. It was suggested that a short presentation of NIEHS centers be given at the Udall meeting as a follow up.
  • Update on Global Portfolio: This work is on-going, and has a three-pronged approach for Federal (NIH, DOD, VA), private (voluntaries, pharma?), and international activities in PD. We hope to make this tracking update available annually in some format on our website.

Summary of activities across all institutes:

NIMH: Deb Babcock discussed that so far, their grants from the PAS on Cognitive/emotional aspects of PD have been triaged. We may need to work more closely with the study section to see if these invesigators need additional guidance on submitting future proposals. Because it is difficult to measure cognitive symptoms among other schizophrenia symptoms, there is now a Schizophrenia project called "Matrics". They are holding a series of meetings including FDA, drug companies, and the scientific community to develop cognitive assays for schizophrenia. This activity is contracted through UCLA. Wayne Fenton will head the formal working group meeting on June 23-24. www.matrics.ucla.edu/matrics-org-chart.shtml Cynthia discussed that the study of drugs that affect quality of life as a secondary effect is very complex and not fully addressed by drug companies.

Karl and Stephen discussed that the DOD is interested in "Enhancing human effectiveness" and the relevant performance of those in the military. They have developed an automated neuropsychological assessment, "ANAM". They formulated a library of 31 tests (from the literature) used by NASA, NATO, & computerized them for ease of testing. They took a subset of 4-5 modules and made a test battery out of them. This is to assess both emotional and cognitive functions. They are presently validating this against CAN TAB-testing at U MD.

NINR- Pat Grady presented 4 new grants on PD. One is specifically on research integrity in clinical trials including those for PD. Another is on chronic illness and care-givers in AD/PD. A third grant involves a subset of Latino patients and health disparities in PD, and the fourth is looking at sleep-disorders. Mary reminded the group that they have 6-7 PA's out on Quality of Life and symptom management, including mobility.

NIDA: Barry reiterated the genetics studies going on with the Swedes and Taiwanese. They are also continuing to look at small molecules, TGF-B upregulation of receptors.

NHGRI is continuing their animal studies and making PD mouse models. Chris also mentioned that perhaps an analysis of the pharmaceutical company portfolio would be worthwhile and commented that a lot is going on in big pharma on PD (for example, Kordower/Seragene is trying to get IND for gene therapy of GDNF). A lot of this information is in the public domain.

Marian mentioned that the same point has been raised in the PD community. The "PD Pipeline Project" is focused on gathering information on what's happening in pharma and with the FDA. Perry Cohen is head of this effort.

NIEHS: Cindy mentioned their Program Announcement which has been sent out again on Environmental Exposures in the prenatal period. They are also releasing a PAS on the role of environment in neuro-degenerative diseases, especially ALS. Lastly they would like to develop a panel of neurotoxicants for PI's to use to help get more consistency in studies.

NCRR: They will be expanding their mouse repositories, including the mutant mouse repository and encourage other IC support and participation.

NCCAM: AHRQ has come out with report evidence based analysis of SAM-E in depression, so they will have a PA coming out on this. They also have a project at Emory. There will be a symposium at the next experimental biology meeting on neuroprotective qualities of herbs (things like creatine, anti-oxidants, blueberries, etc) It was mentioned that the USDA has a project ongoing at Tufts on this topic.

NIA: Two grants came in response to the NIA RFA, one on PD and one on Lewy Body Dementia. It was also mentioned that they will be expanding their data set to include motor symptoms, etc. associated with PD. Judy mentioned that Don Gash's program Project on old monkeys has been renewed. This is an all-inclusive study including imaging, testing of neurotrophic factors, etc. They have also 2 new K awards, one on imaging for sub-types of PD and one on a-syn/parkin.

DOD: They have expanded their portfolio to $21 M this year, and have about 2 dozen new projects. An important topic is co-morbidity (what other systems are affected in PD). Karl also mentioned Permethrin (which is sprayed onto soldiers' uniforms) which may be a risk factor for PD. They have better biomarkers now to track its absorption and will do follow up studies. The GAO has asked for data on the number of soldiers that may be affected by 1st Gulf War, and they are continuing to study other types of environmental exposures.

VA: Bill described the VA program as similar to NIH intramural programs. They currently invest ~$7M in PD. They have re-announced their previous RFA which should bring in new projects on neurodegeneration, including AD, PD, and ALS. They have 2 environmental hazard centers interested in studying the effects of jet fuels, but are not yet looking at PD. There is also a NeuroImaging Project with Mike Weiner in San Francisco which is to be developed as a "center for excellence".

NIGMS: They are maintaining their portfolio of basic, investigator-initiated science. Training program for MD/PhD students is a good way to influence the direction they take.

NIDCD: NIDCD is sponsoring a workshop on neurological motor speech disorders on June 16th-17th. M. Delong and Christy Ludlow will give talks.

NICHD: They are continuing to contribute in the area of function and rehabilitation. They have approximately 10 studies which are R01's or SBIR's, and will be hosting an NIH-wide conference on Physical Disability Throughout the Lifespan July 21-22.

Last updated February 09, 2005