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PDCC Minutes - Januray 4, 2006

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Dr. Landis opened the meeting, extending New Years’ wishes and led round table introductions. 

Parkinson’s Plan from Summit Recommendations:

Dr. Murphy began the session providing background information on report language being required from both the House and the Senate this year.  The report to the House included a briefing on the Summit and was submitted in late last year. Dr. Melinda Kelley sent around an email outlining our Parkinson’s Disease Research Plan for feedback from the group. NINDS will be working on the Congressional Appropriations Committee Report over the coming month but wanted to have a PD plan well underway to facilitate PD research planning the next few years.

Dr. Kelley reported that the draft document represented our take on priorities identified at the June Parkinson’s Disease Summit Meeting.  Many of the goals established in the Parkinson’s Matrix from the previous meeting have been fulfilled and the hope is to incorporate new goals while not abandoning old ones.  Dr. Kelley also provided a handout which represented the top and middle tier recommendations from the Summit.

The Congressional Report is due to the Senate March 1st and while there is no deadline for the PD Plan it was hoped that the PDCC members could review the draft and provide comments and feedback, including any initiatives or projects that were missed. This information would help tremendously in writing the Senate Report.

Dr. Landis’ comment concerning the draft report was that she would like to see a more bulleted Executive Summary type document and others agreed that a streamlined version with main points be provided perhaps in addition to the text-heavy version. This would facilitate review and perhaps be easier to pinpoint specific plans that could be implemented or addressed. Dr. Landis’ also stressed that the goal was to not make the document NIH-centric but share credit and responsibilities among other funding agencies.

Roundtable Updates:

The following represents information provided by the ICs in development of the Parkinson’s Plan. Further comments on the Plan will be accepted until January 10th to Diane Murphy and Melinda Kelley. A revised document will be submitted to the group for review.

DOD

Dr. Grate suggested that information on collaborations such as the L-DOPA or GDNF follow up studies could be highlighted. Information on the PRECEPT the collaboration should also be included.

NIA

Dr. Morrison-Bogorad asked if comorbidity studies on AD, and clinicopathological correlations could be mentioned for their relevance to Parkinson’s.  It was also suggested that a push for integration could be emphasized instead of merely emphasizing the importance of pathophysiology, etc. An example of integration could be the Coordinating Center.

Dr. Phelps commented that in the upcoming World Parkinson’s Congress in February much emphasis was being placed on patient care issues, however there were not a lot of plans for this type of emphasis in the Parkinson’s plan.   

VA

Dr. William Goldberg suggested that the collaboration in the current DBS trial should be highlighted. The rest of the program really mirrors what NINDS is currently doing though they are slightly ahead with their non-motor program. In mentioning the six PD Centers established as the surgical centers for the DBS trial a question was raised about whether they were collecting blood for the repository and follow-up information will be provided. An MOU between the VA and NIH is in progress on this issue.

NINDS

Dr. Landis mentioned the plan to include Parkinson’s in the list for the NHGRI genome screen. More samples can be collected of well characterized subjects and perhaps a supplement program initiated to support such an effort could be considered.

Dr. Galpern reported on the progress of the Futility Studies conducted in the NET -PD trial.  The current plan is to take one of the four drugs investigated into a larger Phase III clinical trial.

NIEHS

Both Drs. Lawler and Kirshner reported that with a new Director, the Institute is in a state of flux and that greater emphasis could be placed on broader disease categories instead of specific disease programs such as Parkinson’s. Information regarding the NIEHS strategic plan will be presented at their February Council and will be reported to the next PDCC.

Dr. Landis suggested that NIEHS and NINDS get more information on the CDC program whereby a person can be evaluated for environmental toxins at a charge of $1,000/person. We could consider including this in some of our clinical trials.

Coding:

Lynn asked that the group begin to provide her with their Parkinson’s grants by the 2nd week in March. Abstracts for funded grants would be appreciated. An email reminder will be sent in the next week.

World Parkinson’s Congress:

Dr. Murphy reminded the group that the World Parkinson’s Congress will be February 22-26 at the Convention Center in Washington, DC. Registration is still going on and can be accessed at their site: http://www.worldpdcongress.org/. 

Information on the NINDS supported Satellite Session on dementias associated with Parkinson’s disease to be held Wednesday, February 22 from 8:00 am to 3:00 pm at the Convention Center was also provided.   Further information regarding this symposium can also be found on the WPC website.

Blueprint Activities:

Lastly, Dr. Murphy presented the group with information on the Blueprint Activities focusing on Neurodegeneration for the year.  In collaboration with other Institutes in a working group co-chaired by NIA and NINDS a workshop has been planned for March 6 and 7th, 2006. Names of potential invitees have been approved by the IC Directors and the suggested chairs are Drs. Federoff and Barres.  The group is currently working on putting together an agenda.  An RFI was released soliciting information from the community on potential important topics to be discussed. Updates will be provided to the PDCC.

ATTENDEES

Dr. Story Landis (NINDS)

Dr. Audrey Penn (NINDS)

Dr. Diane Murphy (NINDS)

Dr. Eugene Oliver

Lynn Morin (NINDS)

Dr. William Goldberg (VA)

Ms. Carol Rowan (NINDS)

Ms. Marian Emr (NINDS)

Dr. Melinda Kelley (NINDS)

Dr. Marcel Morrison-Bogorad (NIA)

Dr. Tony Phelps (NIA)

Dr. Lana Shekim (NIDCD)

Dr. Stephen Grate (DOD)

Dr. Aideen McInerney-Leo (NHGRI)

Dr. Martha Hare (NINR)

Dr. Jerry Frankenheim (NIDA in for Dr. Nancy Pilotte)

Dr. Michael Weinrich (NICHD)

Dr. Jim Battey (NIDCD)

Dr. Nancy Pearson (NCCAM)

Dr. Wendy Galpern

Dr. Annette Kirshner (NIEHS) via phone

Dr. Cindy Lawler (NIEHS) via phone

Last updated January 10, 2006