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Organizational Structure of IRDiRC
IRDiRC is governed through a Consortium Assembly, an Operating Committee, three Constituent Committees and three Scientific Committees, aided by ad hoc Task Forces. The Scientific Secretariat provides organizational and communications support. The composition of these bodies are described below.
The IRDiRC Consortium Assembly is composed of one representative per member organization (funding body, group of funders (for small funders), company, umbrella organization of patient advocacy groups), and the Chair and Vice Chair of each of the three Scientific Committees. Among the organization representatives, a Chair and a Vice Chair of the Consortium Assembly are elected for a period of 3 years that can be renewed once.
The Operating Committee consists of the Chair and the Vice Chair of the Consortium Assembly, the Chairs of the Constituent and the Scientific Committees, and the Scientific Secretariat. The Operating Committee meets regularly to prepare and advance IRDiRC activities, process information, and enable more effective management of the Consortium as a whole.
IRDiRC has three Constituent Committees:
- Companies Constituent Committee (CCC)
- Funders Constituent Committee (FCC)
- Patient Advocates Constituent Committee (PACC)
Each Constituent Committee is composed of IRDiRC members who are identified as part of that constituency (e.g., industry-based IRDiRC members participate in the Companies Constituent Committee). The Constituent Committees act as coordinating bodies of each respective constituent space, inform the Consortium Assembly of scientific and programmatic needs following identification of common roadblocks, gaps and priorities, and execute activities specific to their constituency space that will bring IRDiRC closer to its goals. The Chair and the Vice Chair of each Constituent Committee are elected for a period of 3 years that can be renewed once.
IRDiRC has three Scientific Committees:
- Diagnostics Scientific Committee (DSC)
- Interdisciplinary Scientific Committee (ISC)
- Therapies Scientific Committee (TSC)
Each Scientific Committee is composed of approximately 15 members with balanced expertise and representation from academia, patient organizations, diagnostics, pharmaceutical industry, and regulatory bodies. The Scientific Committees identify and propose actionable projects to advance rare disease research, report on Task Force activities and progress made from a scientific point of view, advise the Consortium Assembly on research priorities and funding gaps, and execute activities in their scientific areas that will bring IRDiRC closer to its goals. Members of the Scientific Committees are nominated for their individual expertise and approved by the Consortium Assembly. The duration of the initial mandate of the Scientific Committees members is 3 years, with the possibility of one renewal. The Chair and the Vice Chair of each Scientific Committee are elected for a period of 3 years that can be renewed once.
The Task Forces are created to tackle specific topics within rare diseases research proposed by the Constituent and/or Scientific Committees and selected as prioritized actions by the Consortium Assembly and the Operating Committee. Each Task Force reviews current barriers to efficient and effective rare disease research, and proposes solutions through policy recommendations and/or technical applications including platforms, tools, standards and guidelines. Members of the Task Forces are nominated based on their expertise in the selected area and include key players of diverse backgrounds to ensure different perspectives are taken into consideration to drive innovation and new approaches. The Task Forces may operate, on a time-limited mandate, either solely as IRDiRC initiatives or jointly with partner groups that wish to collaborate and address similar issues.
The Scientific Secretariat provides organizational, secretarial, reporting and communications support to IRDiRC and its members. Currently based in Paris, France, the Scientific Secretariat also collects and disseminates results of research funded by IRDiRC members, coordinates the reviews of IRDiRC Recognized Resources, updates metrics to assess progress made on IRDiRC goals, identifies reports and guidelines of interest for use by the rare disease research community, produces the State-of-Play of Research reports, and plays a pivotal role in organizing all IRDiRC Conferences, meetings, and teleconferences to further the mission of IRDiRC and its members.
Office of the IRDiRC Chair
In addition to the Scientific Secretariat, the Office of the Chair supports IRDiRC actions on defined strategic projects as well as global Consortium activities, reinforces the activities of the Scientific Secretariat, assists the organization of communication channels between the Chair and Consortium members, and provides activity reports to the Chair.