About us
IRDiRC is a consortium of research funding agencies and interested parties acting to accelerate research through collaborations
Objective 2020: 200 new therapies
Follow the progress towards developing and authorizing 200 new medicinal products to treat rare diseases by the year 2020.
Objective 2020: identify all genes
Follow the progress towards developing a diagnostic test to identify most rare diseases by the year 2020.
“IRDiRC Recognized Resources”
A label to highlight key resources to accelerate research on rare diseases. Access the application form for “IRDiRC Recognized Resource”.
State of Play of Research Report
Read the analysis by IRDiRC of recent major research initiatives and outcomes, and of identified trends likely to shape the future
Matchmaker Exchange Task Force
IRDiRC-Global Alliance Matchmaker Exchange aims to provide data sharing tools to match unsolved genome/exome sequence cases
Patient Centered Outcome Measures Task Force
The development and adoption of patient-relevant and -reported outcome measures are instrumental in accelerating R&D
Small Population Clinical Trials Task Force
Collaborative effort on adaptive design, statistical methods and acceptability of new methods in small population clinical trials
Automatable Data and Access Task Force
To make the most of clinical data sources worldwide, accessing patient consent is crucial to share data and improve research participation.
Data Mining and Repurposing Task Force
Exploiting existing data and knowledge is essential to identify new therapeutic targets and to repurpose drugs.
International Consortium of Human Phenotype Ontologies
ICHPT: Core set of terms to be incorporated in any Human Phenotype Terminology intended to describe rare diseases.
Privacy-Preserving Record
Linkage (PPRL)
PPRL aims to develop a policy for the generation of participant-specific identifiers across projects without revealing the participant’s identity.