Registry of Outcome Measures
Welcome to ROM, an on-line Registry of Outcome Measures that provides TREAT-NMD partners and the wider NMD community with information about existing outcome measures. ROM is intended to be a convenient first stop for important base information about existing outcome measures and clear directions to key points of contact and comprehensive sources of information. The database will be updated on a continual basis.
What ROM Contains
The databases contains fairly detailed summary information about outcome measures. This includes a description, information about availability, contact details for providers (e.g. device suppliers, distributors of outcome measures), and references to various related documents. It is expected that the number of outcome measures documented in ROM will expand over time.
How is ROM Data Populated
Outcome measure records are created and maintained using an on-line form. The form takes around 15 to 30 minutes to complete in most instances. Information is contributed and maintained by various people around the world; sometimes by the person/group that developed the outcome measure, sometimes by investigators or medical practitioners who have developed a sound working knowledge of the outcome measure through use or research. Every effort is made to ensure that records are as comprehensive and accurate as possible.
If you would like to contribute to the population of the database, by creating a new record, adding to an existing one, or alerting us to what you believe to be an error, please contact the Registry Co-ordinator.
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.