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2003 Meeting Summary

The 2003 Annual Meeting of the NYSMSC was held at the New York Athletic Club in New York City on September 5th. Nearly all site investigators participated, along with several site coordinators.

The meeting opened with a review of the current status of the NYSMSC. Thereafter, most of the meeting was devoted to two critical issues: Reorganization and Data Management, which was first on the agenda.

UDSMR, the newly contracted data management center, presented a proposal for a new data collection and reporting system. They explained the enhancements to the present data collection structure, which would enhance both data integrity and validity checks.

On the subject of reorganization, participants discussed a new administrative structure for the Consortium that would better define and allocate areas of interest and responsibility. The proposal presented to the membership involved the establishment of an Executive-Financial Committee, a Scientific Review Committee and six Research Interest Groups. The reorganization would also include the formal establishment of written policies and procedures that would cover the main activities and concerns of Consortium member sites:

  • Data Forms – requests and submissions
  • Data Requests – internal and external
  • Data Ownership
  • External Collaborations
  • Finances – revenues and payments to sites

Once the critical discussions concluded, several shorter presentations followed before the adjournment of the meeting. These presentations covered additional topics of interest that included:

  • Current and Anticipated Financial Support – included discussion of the Consortium’s financial structure, coordination of fundraising and different ways to increase financial support, e.g., cultivating industry relationships, seeking external collaborations and securing NIH and/or NMSS grants.
  • Evaluation of the Current Questionnaire – concerned the inadequacy of the current questionnaire in certain areas and that several previously approved revisions had not yet been implemented. It was emphasized that the need was urgent for a major revision and Dr. Zivadinov was empowered to modify the questionnaire on behalf of the NYSMSC.
  • LIFEware Database – This presentation summarized the results of the functional status of NYSMSC participants who were tracked over a five-year period.
  • Status of Current Projects and Proposals for Future Projects – provided the results of an analysis of pediatric MS in the NYSMSC, emphasizing the need to register more pediatric patients in the Consortium.