International collaboration and drug repurposing: New recommendations from IRDiRC Task Forces
Multiple Task Forces of the International Rare Diseases Research Consortium (IRDiRC) have published new recommendations on how strategies such as clinical research networks (CRNs) and drug repurposing can be used to improve the lives of people living with rare diseases.
IRDiRC is a global collaborative initiative which seeks to advance the understanding and impact of rare disease diagnosis and treatment on a global scale. Its various Task Forces and Working Groups work in service of this goal, by identifying gaps and key issues in rare disease research, and producing guidelines, recommendations and resources to help overcome them.
Led by EURORDIS Therapeutic Development Director Virginie Hivert, the Task Force on Sustainable Models in Drug Repurposing was set up to identify key factors for achieving sustainable approaches to medicines repurposing in rare diseases. Drug repurposing often presents a faster, safer, and cheaper option for discovering treatments for novel indications; but it can be hindered by a range of barriers. To better understand these barriers and how they might be overcome, the Task Force compiled literature reviews and expert evidence. In total, they identified 10 elements which are important to ensuring the sustainability of a repurposing project.
Similar to the drug repurposing Task Force, the Task Force on Clinical Research Networks is dedicated to uncovering barriers to international collaboration between CRNs. In the context of rare diseases, CRNs present important opportunities for multi-stakeholder collaboration across disciplines, which can deepen understanding and help accelerate clinical research and innovation. However, current CRNs are typically limited to the national or continental level, with a lack of concentrated effort being put towards large-scale, international collaboration. The Task Force surveyed CRNs worldwide, and developed a roadmap of actions for the development of international rare disease CRNs based on the challenges and needs they identified.
Implementing each set of recommendations would mark an important step towards improving access to high quality diagnosis, treatment, and care for people living with rare diseases in all countries. By continuing the work of these and other Task Forces and Working Groups, IRDiRC is ensuring that no members of the rare disease community gets left behind.
