Task Force “Data Sources”

The Companies Constituent Committee (CCC) is establishing a Task Force on the Use of Data Sources and Registries to provide practical experience-based guidance for very small populations to navigate a complex landscape of recommendations for a high-quality, standardized, and interoperable data ecosystem as cornerstone to accelerate treatment development and regulatory decision-making.

IRDiRC is looking for members to populate this Task Force representing different stakeholders with the above expertise and experience in the following areas:

• Data holders
• Registry sponsors commercial and non commercial
• Use of Real-World data in decision making
• Applied Analytics
• Artificial intelligence
• Data collection and data management
• Data quality, data standards, data protection and privacy
• Common data models
• Totality of evidence
• Enforcement of Real-World Evidence frameworks and guidance
• Patients experience data
• Methodologists

The call for candidates is open to experts from around the globe. Experience in rare disease and a broad understanding of the challenges in evidence generation in this therapeutic area are critical.

The usual time commitment includes monthly 1-hour teleconferences, one face-to-face workshop (2 days), regular email correspondence and collaborative working, with the opportunity to co-author peer reviewed article(s).

If you are interested in taking part in this activity, please send a CV, biosketch and letter of motivation clearly describing your expertise to the Scientific Secretariat scientific.secretariat[at]irdirc.org before the 20^th of February, 2026.

Please add in the subject of your email the reference for this call Ref: TF-DR.

Only selected candidates will be contacted.