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URL: http://www.researchrom.com/
Proper Citation: Neuromuscular disease outcome measures (RRID:SCR_006267)
Description: ROM is an on-line Registry of Outcome Measures and associated tools designed to give guidance, information and assistance to international collaborative teams of reviewers undertaking the crucial task of choosing the right outcome measures (OMs) for neuromuscular disease trials and studies. It is also hoped that the Registry will reduce duplication of effort in this area. Outcome measures are the tests that investigators perform to decide whether a treatment being tested in a clinical trial is having any effect. These can come in many different forms from assessing how far a patient can walk in six minutes to looking at changes in their muscle through a biopsy and using the right outcome measure is a vital step in making sure a trial can really prove whether or not a treatment works. The searchable Registry contains information about OMs, such as a description, details of validation, availability, contact details for providers, and references to related documents including manuals and training videos. Review teams can record OMs by category as being considered for a specific study or trial and benefit from seeing the OM choices being considered by other review teams. A manual gives advice on how to assess and select OMs. Information contained in ROM may also prove useful to doctors, clinicians, physiotherapists, industry and other organizations with an interest in OMs relevant to NMD research.
Abbreviations: ROM
Synonyms: TREAT-NMD: Registry of Outcome Measures, TreatNMD Outcome Measure Registry, Registry of Outcome Measures
Resource Type: data or information resource, database
Keywords: assessment, spinal muscular atrophy assessment, duchennes muscular dystrophy assessment
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