The IRDiRC Interdisciplinary Scientific Committee (ISC) works on cross-cutting aspects of rare disease research, including data sharing, ontologies, natural history, biobanking and registries. The ISC works closely with the Diagnostics and Therapies Scientific Committees to develop bridging aspects and standards, and plays a key role in promoting the IRDiRC Recognized Resources.
The ISC has been instrumental in developing and supervising the Task Force aimed at enabling automatable consent-based data discovery and access. The ISC also developed a guiding policy in the generation of privacy-preserving identifiers for research participants across multiple projects, and model consent clauses for rare disease research.
In advancing towards the 2027 IRDiRC goals, the key actions of the ISC in the short term are:
- Developing recommendations on guiding principles for national/trans-national policies for clinical research networks within an international context to enable collaboration and interoperability
- Facilitating the conduct of natural history studies relating to rare diseases
|Name||Title and Organization|
|Philip John (PJ) Brooks (Chair)||Program Director, Office of Rare Diseases Research at the National Center for Advancing Translational Sciences (NCATS) part of U.S. National Institutes of Health (NIH), USA|
|Marc Dooms (Vice-Chair)||Center for Clinical Pharmacology, UZ Leuven, Belgium|
|Elizabeth McNeil||Senior Director, Clinical Development, Bluebird Bio, Cambridge, USA|
|Esther Van Enckevort||Technical Project Lead at the University Medical Center Groningen, Leiden, The Netherlands
|Kate Baker||MRC Cognition and Brain Sciences Unit, University of Cambridge, UK|
|Mahsa Shabani||Assistant Professor in Health Privacy Law, Faculty of Law and Criminology, Ghent University, Belgium|
|Matthew Might||Director, Hugh Kaul Precision Medicine Institute, Birmingham, USA|
|Takeya Adachi||Research Assistant Professor at the Kyoto Prefectural University of Medicine, Japan|
|Yllka Kodra||National Center for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy|
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