Following third International Rare Disease Research Consortium workshop, nominations open for the three global Scientific Committees
The third workshop of the International Rare Disease Research Consortium (IRDiRC) was held in Montreal, Canada on 8-9 October 2011, following two previous workshops in Iceland and the USA. The workshop, hosted by the Canadian Institutes for Health Research and Genome Canada and co-organised with the European Commission and the US National Institutes of Health, came just before the 12th International Congress of Human Genetics; making Montreal the place to be in October.
For the third IRDiRC meeting, some 100 international participants representing public and private funding organisations, scientists, regulators, industry, and patient groups were onboard, working together to develop common scientific and policy frameworks that will guide the activities of the participating IRDiRC members. Identifying priority research areas was a principal topic, as well as addressing the regulatory challenges in an international context. Initial goals put forward by the IRDiRC founders include 200 new treatments for rare diseases by the year 2020 and have a diagnosis available for most, if not all, rare diseases. A series of Round Table presentations provided an update of the current and planned actions by the funding agencies committed to IRDiRC.
Nominations for the three IRDiRC Scientific Committees now open
The meeting was also the occasion to discuss establishing a governance structure. Nominations for the three IRDiRC Scientific Committees, encompassing Diagnostics (including sequencing and characterization), Therapies (including pre-clinical and clinical development), and Horizontal Aspects (including ontologies, national history, biobanking, registries etc) are now open. The Scientific Committees will advise the Executive Committee on research priorities for future R&D investments and on progress made of funded research. Specifically, the Scientific Committees will:
- Act as scientific coordinating bodies
- Propose research priorities for consideration by the Executive Committee
- Propose policies and guidelines for adoption by the Executive Committee
- Assess progress made by the Working Groups (i.e. projects funded)
- Address arising issues of scientific nature
- Encourage exchange of protocols and best practices, and agree on standard operating procedures, quality standards, etc
The deadline for submitting a nomination is 15 December 2011 (Learn more). An Interim IRDiRC Executive Committee meeting is scheduled for January 2012. To be held in Belgium, appointing the members to the IRDiRC Scientific Committees will be a priority at this meeting.
The official report of the third IRDiRC workshop will be released soon. In the meantime, the full agenda, list of participants, and presentations can be viewed on the European Commission’s DG Research and Innovation website.