Two TREAT-NMD resources received the “IRDiRC Recommended” label: TREAT-NMD Patient Registries and Standard Operating Procedures (SOPs) for preclinical efficacy studies.
The TREAT-NMD global network of national registries provides a single entry point for access to patient data worldwide. The TREAT-NMD global registry contains a core set of information including accurate, verified genetic diagnosis together with key clinical data items, all updated at least annually , with submitted data curated and verified at a national level.
SOPs consist of a collection of experimental protocols for the most common outcome measures used to assess drug efficacy in models of neuromuscular disease. The SOPs were developed by a group of preclinical experts and made freely available on the net to facilitate research and as a tool to encourage research groups to choose common procedures in assessing drug or treatment efficacy by different outcome measures.
IRDiRC Recommended is a quality indicator highlighting tools/ standards/ platforms or guidelines contributing to IRDiRC’s objectives. It focuses on key resources for research communities to accelerate clinical translation. More information about this initiative can be found here.