European Medicines Agency (EMA) publishes guideline on registry-based studies

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The European Medicines Agency (EMA) has announced the publication of a guideline on registry-based studies following its adoption by the EMA’s cross-Committees Task Force on registries and the Committee for Medicinal Products for Human Use (CHMP). The guideline provides pharmaceutical organisations with key methods and good regulatory practices on the planning and conduct of studies…

Call for Members: IRDiRC Task Force on « Enabling and Enhancing Telehealth for Rare Diseases Across the Globe »

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The Funders Constituent Committee of the International Rare Diseases Research Consortium (IRDiRC) has set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors. This will be accomplished through survey and…