White, Laura and Yusuf, Odunayo and Knight, Jo and Lilleker, James B and Emsley, Hedley (2025) Development of consensus minimum data sets for three index neuromuscular disorders. Journal of Neurology, Neurosurgery and Psychiatry, 96 (Suppl.): 49. A15. ISSN 0022-3050
Full text not available from this repository.Abstract
Background Analysis of large datasets holds great promise for improving our understanding of rare neurological disorders and informing health policy. Minimum data sets (MDS) comprise the essential data elements for use in clinical and research purposes; this standardises data for collation, comparison and analysis, and improves generalisability. There are no consensus MDS for many neurological disorders. We aim to develop MDS for three index neuromuscular disorders: motor neuron disease (MND), myasthenia gravis (MG) and GuillainBarre syndrome (GBS). Methods A systematic review of the data items collated in observational studies for MND, MG and GBS is underway. Results from the systematic review will aid consensus discussion on the data items to include in an MDS for each condition. A process called the Nominal Group Technique (NGT) will be used to structure the consensus meetings. We plan to perform NGTs with both clinicians and patients. Results We will present the systematic review results and the NGT protocol. Provisional results from the systematic review indicate that a variety of data elements are collected for these diseases across different registries. Conclusions Consensus MDS have the potential to significantly improve our understanding of rare diseases by facilitating structured collection and analysis of large datasets.