Registry of Outcome Measures
Welcome to ROM, 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.
Information contained in ROM may also prove useful to doctors, clinicians, physiotherapists, industry and other organisations with an interest in OMs relevant to NMD research.
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.
More information on specific features and tools is provided below and in the relevant area of the Registry.
The Registry will be updated on a continual basis.
Looking for Something Specific
If you are looking for a suitable outcome measure (OM) or require information about one, we may be able to help. If you can't find the OM you are looking for in the Registry, contact the Registry Co-ordinator. They may be able to assist you in your search.
FAQ
Take a look at the FAQ page. Your question may already be answered. If you don't find the answer there, please contact the Registry Co-ordinator. They will endeavour to help you find an answer and may use your question to help others in their quest as well.