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Parkinson's Disease Coordinating Committee Minutes

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2004 Event Series Calendar

Parkinson's Disease Coordinating Committee Participant List

PDCC MINUTES

January 21, 2004


Dr. Landis opened the meeting with welcoming remarks and mentioned that she looked forward to hearing more about the involvement of all the NIH Institutes and Centers (ICs), as well as the Department of Defense (DoD) and Department of Veterans Affairs (VA), in Parkinson's disease (PD) research.

MATRIX UPDATES

Dr. Murphy thanked the group for submitting timely changes/updates to the matrix and FY2004 PD CACR, and noted that the CACR has recently been submitted to the budget office. She also commented that matrix updates were planned for 6 month intervals, and that the current updates are under review with the Office of Science Policy and Planning and will be ready for web posting in a few weeks.

ANNUAL PORTFOLIO ANALYSIS

Dr. Murphy noted that an analysis of the federal and voluntary portfolio of PD grants is ongoing, and will ultimately be posted to the NINDS PD Research website. The analysis is being conducted utilizing a database of grants funded through federal as well as private sources, and is still under development.

NIDA attendees asked for further clarification of the "pharmacological approaches" code that is used in the analysis. Specifically, they expressed concern that this code was being used primarily for clinical trials. NINDS staff noted that both preclinical and clinical research could be captured under this code, with the exception of high throughput studies (which should be coded separately). Dr. Landis suggested expanding the name to "pharmaceutical/pharmacological approaches."

ADVOCATE ACTIVITIES UPDATE

Dr. Landis noted that some PD voluntary organizations have been meeting with other ICs, and she offered participants an opportunity to provide updates on these discussions.

NINDS: International Meeting for PD
Ms. Marian Emr noted that in September 2002, Dr. Zerhouni had called on the PD voluntary community to organize and host an international meeting on PD. Mr. Robin Elliott of the Parkinson's Disease Foundation (PDF) has taken the lead and is organizing the meeting with the Movement Disorders Society. Organizers currently include Drs. Olanow, Fahn, Federoff, Lozano, Shoulson and Langston from the scientific community, Drs. Murphy, Kirshner, Lawler and Marian Emr from the NIH, and Dr. Friedl from the DoD. Formal committees to handle the administrative and scientific management of the meeting are in development, although the group has already selected a meeting date of October 22-26, 2005, and has reserved the Washington Convention Center for the event. At present, the goal of the meeting is to bring the leaders in the international scientific community together with patient groups to discuss current research efforts in PD. The meeting agenda will include a plenary session, poster sessions, town hall meetings, and exhibits.

The organizers anticipate an attendance of 5,000, at a cost of $2-4 Million. Funding will be solicited from industry, the Parkinson's voluntaries, meeting registration fees, and an NIH grant (yet to be submitted). It was suggested that the planners prioritize their funding needs in the event they don't get all the money.

PDCC participants discussed new R13 procedures, and the need for an application to be submitted as soon as possible. Dr. Landis promised to notify other ICs once an application is received. It was noted that a U13 mechanism might be more appropriate, since NINDS has played and will continue to play a substantial role in organizing the meeting.

NIA: NIA participants summarized a recent meeting held with the Parkinson's Action Network. Topics included the relationship between the Alzheimer's disease (AD) Research Centers and the Udall Centers, non-motor initiatives, age-related motor impairment, and the overlap between neurodegenerative diseases. They showed interest in the AD progress reports, and Dr. Murphy explained that NINDS would be producing similar for PD in the near future.

NIEHS: Dr. Annette Kirshner informed the group that Deborah Brooks, Executive Director of the Michael J. Fox Foundation is currently a member of the NIEHS Council, and that she is also a member of the search committee for a new NIEHS director.

NHGRI: Ms. Aideen McInerney noted that she has provided lay updates of NHGRI research projects to the PD voluntaries, in order to recruit for their genetics studies.


SUMMARY OF PARKINSON'S RESEARCH ACTIVITIES BY INSTITUTE

Dr. Murphy reminded the group that upcoming conferences can be added to the Neurodegeneration Event Series Calendar which is posted on the NINDS PD Research website. Links can also be created to any current PD-related initiatives or solicitations.

NINR: Kathy Mann Koepke provided information on NINR PAs that are relevant to PD, including solicitations on biobehavioral pain research, quality of life in mobility disorders, informal caregiving for chronic conditions, and the multi-institute initiative on Research on Ethical Issues in Human Studies. NINR is also in the process of planning a workshop on impairments in physical health related to neurological and psychiatric disorders, as well as behavioral/cognitive interventions.

NIDA: Dr. Nancy Pilotte provided brief information on the program announcement "Interaction Between Stem Cells and the Microenvironment In Vivo" that NIDA has joined in with NINDS; NIDA is also planning a meeting on neuroprotection and neuroresilience, and is hoping to release an RFA on the topic in 2005. Interest in DBS for drug abuse was also mentioned. Dr. Barry Hoffer noted that the international meeting on transplantation and neural regeneration will be held in June 2005 in Taipei, and that his intramural laboratory continues to be involved in studies of neurotrophic factors, transplantation, and the genetics of PD.

NIMH: Dr. Deborah Babcock discussed the ongoing program announcement "Basic and Translational Research on the Cognitive Sequelae of Parkinson's Disease" that NIMH has joined with NINDS. She also listed other relevant initiatives including those on co-morbid medical conditions, mental illness in older adults, caregiving, animal stem cells, and ligands in drug development (an SBIR program), but noted that they have not yet funded any PD-related applications under these programs. Dr. Babcock also noted that a Neurogenesis meeting will be held March 18-19, 2004.

NIEHS: Dr. Annette Kirshner noted that NIEHS is holding a meeting with grantees in June, to discuss research progress and develop an agenda for future action. NIEHS has an ongoing a PAS on "Gene/Environment Interactions in Neurodegenerative Disorders"; it is focused on ALS this year, but the focus of future years will be influenced by the discussion at the June meeting. NIEHS has also proposed a symposium on PD to the International Society for Environmental Epidemiology (ISEE) focused on a range of issues from genetics to the environment. Lastly, NIEHS has funded several PD-related grants as a result of their initiative on the fetal basis of adult disease.

Dr. Kirshner also provided information on a series of new working groups established in the Collaborative Centers for Parkinson's Disease Environmental Research (CCPDER) in order to identify the resources needed to support cross-center collaborations. Topics of the seven working groups include behavioral batteries for PD, toxicants, genomics, transgenic models, epidemiology/toxicology, epidemiology/genetics, and tissue banking.

PDCC participants discussed tissue banking and the sharing of animal models as common concerns across NIH. Dr. Murphy noted that the expansion of tissue banking capacity at the Udall centers and the development of the Parkinson's Disease Data Organizing Center should increase the availability of PD tissues for research. Regarding the sharing of models, it was noted that cost and intellectual property issues are often used by investigators as reasons they cannot share their promising models with other laboratories. However, NINDS noted that their UCLA repository is available to help defray costs, and NCRR also described resources that are available to investigators. Dr. Landis commented that the PD voluntaries might be an effective collaborator in encouraging the research community to deposit their PD models into these common facilities.

VA: Dr. William Goldberg relayed information on the VA's ongoing RFA for PD- related neurodegenerative diseases. The VA has received 31 proposals, of which they will be funding 7, 3 in Parkinson's.

DOD: Dr. Stephen Grate provided an update on several meetings the DOD has organized to evaluate obstacles to publicly-funded research. Seven of these meetings are planned, and the minutes of these meetings will be developed into a series of publications. Ultimately all of the groups may be brought together for a broader discussion and the development of an agenda. Although issues including out-year funding for grants make it difficult to predict future awards, he does expect the DoD to be funding a study on metabolomics in PD, and studies on solvent exposure (specifically JP-8) and neurodegenerative diseases. They are also interested in funding a group of concept exploration proposals that result from the meetings described previously, but this program is still in development. Lastly,the DoD has also been approached by a fundraiser working with Muhammad Ali's group. It may be possible for these funds to be donated to NIH via FAES or the NIH Foundation. Dr. Grate also described the Medical Peer Review Program, and commented that there was currently no NIH representative on the peer review committee. Dr. Landis agreed we should follow up on this. Lastly, Dr. Grate offered copies of the Neurology Supplement that resulted from the A2A meeting held in Boston.

NIA: Drs. Marcelle Morrison-Bogorad, Judy Finkelstein, and Tony Phelps provided an update on the Lewy Body Disease planning workshop. This is intended to discuss the definition of LBD and its overlap with LBVAD, AD, and PD. The outcome would be a larger international consensus meeting, which may be held as a satellite to the International PD meeting being proposed for 2005. The Frontotemporal Dementia workshop will take place this summer as a satellite to the Intl AD mtg in July. NIA is also considering a re-issue of the "Collaborative Studies on Alzheimer's Disease and Other Neurodegenerative Disease Associated with Aging" RFA. In addition, they are re-issuing two RFAs for centers, are participating in the DBS efforts with NINDS, and are considering a conference on "selective neuronal vulnerability."

NIDCD: Dr. Lana Shekim did not have any targeted PD initiatives or workshops to report at this time, and has sent a full spreadsheet with their grants for the portfolio analysis.

NCRR: Dr. Franziska Grieder reported on the MRCC Annual meeting that will be held at Natcher, March 30 - April 1, 2004. NCRR has also established a resource at the University of Missouri for genetically-engineered pigs.

NHGRI: Aideen McInerney noted that NHGRI's intramural researchers continue to perform PET scans on participants in their studies who are members of high risk families. They are also studying links between PD and Gaucher disease.

NINDS: Dr. Diane Murphy noted that the receipt deadline for the Parkinson's Disease Data Organizing Center RFA is January 22nd. Staff have already received letters of intent from several groups, including the University of Rochester and the NACC in Seattle. Dr. Murphy also mentioned that the Neurodegeneration 2004 Event Series Calendar is now available on the PD Research website; other ICs can post meetings if they wish. In addition, she noted that Dr. Bernard Ravina is completing publications on two meetings held last year: "The Role of Neuroimaging in Parkinson's Disease," and "Depression in Parkinson's disease: Diagnostic Issues." Dr. Murphy also mentioned several upcoming events including the symposium for Tom Chase on February 26-28, the March 13th Ethics of Genetic Testing in Parkinson's (satellite meeting to ASENT), and the Udall Centers meeting likely to be held in the fall in Baltimore. Lastly, Ms. Marian Emr relayed information on Nature Medicine's request for funds for an upcoming supplement on neurodegeneration to be distributed at the Intl. AD meeting in July. Any IC can support this supplement.

Last updated February 09, 2005