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Data Management and Coordinating Center (DMCC)

The Data Management and Coordinating Center (DMCC) is a central resource within the Rare Diseases Clinical Research Network (RDCRN) tasked with providing data management support and resources to each participating consortium. Members of the RDCRN DMCC will participate in meetings of other GLIA-CTN committees to provide guidance and data stewardship. The RDCRN DMCC is currently based at Cincinnati Children’s Hospital Medical Center.

The GLIA-CTN Data Governance and Data Use Committees have been tasked with creating a sustainable data warehouse for archiving and sharing data with various academic, advocacy, and industry stakeholders, along with leveraging and standardizing common database and application tools for future use.

The GLIA-CTN Data Integration Core (DIC) is comprised of data management personnel at the Children’s Hospital of Philadelphia. Its goal is to establish and maintain a dynamic data management infrastructure that supports real-time data capture across the network, integration of data collected from various systems, and robust quality control features. It has been tasked with creating a sustainable data warehouse for data storage, and will facilitate data transfers to various sponsors and stakeholders, including the RDCRN DMCC.

The GLIA-CTN Career Development and Pilot Project Committee has been tasked with training junior investigators and clinicians who have expressed a desire to dedicate their careers to the study and treatment of leukodystrophies. This committee will help establish educational goals, institute programs, and award candidates for consideration by the GLIA-CTN Executive Committee.

The committee will oversee the process of soliciting applications and awarding funds for Pilot/Demonstration Projects. It will include representatives from the GLIA-CTN Executive Committee and Patient Advocacy Committee. Requests For Applications (RFAs) will be advertised both via this website, and distributed via email lists.

The GLIA-CTN External Advisory Committee (EAC) is comprised of academic, clinical, and/or industry experts who are not directly participating in any of the GLIA-CTN’s research projects, but have extensive experience managing similar programs. This committee meets regularly to review and advise on the program’s activities and progress.

The GLIA-CTN Executive Committee represents the program’s decision-making body. It consists of the administrative unit directors (Drs. Eichler, Fatemi, and Vanderver), clinical liaison (Dr. Bonkowsky), co-investigators, and data integration core. It also includes the RDCRN NCATS program director, RDCRN DMCC representative, and patient advocacy committee chair and co-chairs.

The GLIA Corporate Collaborative will operate in parallel to the GLIA-CTN as an independent 501(c)3 non-profit organization under the legal framework of the Global Leukodystrophy Initiative. Its primary function will be to allow third-party corporate entities to sponsor pilot projects and other consortium-related activities that are not currently funded by the Rare Diseases Clinical Research Network (RDCRN).

The GLIA-CTN Patient Advocacy Committee will formally contribute to and collaborate with all other committees within the program’s administrative core, including the Career Development Committee, Executive Committee, Data Governance Committee, External Advisory Committee, and Pilot Project Committee.

The Patient Advocacy Committee will have its own open and closed-door meetings - including an annual in-person workshop - to review project performance and propose recommendations for the program leadership. The Patient Advocacy Committee will elect a chair and co-chair - each serving a maximum term of one year - and will select additional members to attend meetings of the aforementioned administrative committees.