title: 'IRDiRC Recognized Resources': a new mechanism to support scientists to conduct efficient, high-quality research for rare diseases.
abstract: The International Rare Diseases Research Consortium (IRDiRC) has created a quality label, 'IRDiRC Recognized Resources', formerly known as 'IRDiRC Recommended'. It is a peer-reviewed quality indicator process established based on the IRDiRC Policies and Guidelines to designate resources (ie, standards, guidelines, tools, and platforms) designed to accelerate the pace of discoveries and translation into clinical applications for the rare disease (RD) research community. In its first year of implementation, 13 resources successfully applied for this designation, each focused on key areas essential to IRDiRC objectives and to the field of RD research more broadly. These included data sharing for discovery, knowledge organisation and ontologies, networking patient registries, and therapeutic development. 'IRDiRC Recognized Resources' is a mechanism aimed to provide community-approved contributions to RD research higher visibility, and encourage researchers to adopt recognised standards, guidelines, tools, and platforms that facilitate research advances guided by the principles of interoperability and sharing.
authors: Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK.
authors: Hanns
authors: H
authors: Lochmüller
authors: European Organisation for Rare Diseases (EURORDIS), Paris, France.
authors: Yann
authors: Y
authors: Le Cam
authors: IRDiRC Scientific Secretariat, Inserm US 14, Paris, France.
authors: Anneliene H
authors: AH
authors: Jonker
authors: IRDiRC Scientific Secretariat, Inserm US 14, Paris, France.
authors: Lilian Pl
authors: LP
authors: Lau
authors: Genetic Services of Western Australia, King Edward Memorial Hospital, Perth, Western Australia, Australia.|Western Australian Register of Developmental Anomalies, Perth, Western Australia, Australia.
authors: Gareth
authors: G
authors: Baynam
authors: National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, Maryland, USA.
authors: Petra
authors: P
authors: Kaufmann
authors: Department of Biology, McGill University, Montreal, Quebec, Canada.
authors: Paul
authors: P
authors: Lasko
authors: Department of Health, Office of Population Health Genomics, Public Health Division, Government of Western Australia, Perth, Western Australia, Australia.
authors: Hugh Js
authors: HJ
authors: Dawkins
authors: National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, Maryland, USA.
authors: Christopher P
authors: CP
authors: Austin
authors: Department of Genetics, Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, Ontario, Canada.
authors: Kym M
authors: KM
authors: Boycott
mesh_terms: D005826:Genetics, Medical / Q000191:economics* / Q000458:organization & administration / Q000592:standards; D006801:Humans; D033181:Information Dissemination; D007391:International Cooperation; D010380:Peer Review; D035583:Rare Diseases / Q000175:diagnosis / Q000235:genetics* / Q000628:therapy; D012955:Societies, Medical; D057170:Translational Research, Biomedical / Q000191:economics* / Q000458:organization & administration / Q000592:standards