Registry of outcome measures
The online TREAT-NMD Registry of Outcome Measures (ROM) and its associated tools are designed to give guidance, information and assistance to all professionals seeking details of outcome measures, including international collaborative teams of reviewers undertaking the crucial task of choosing the right outcome measures for neuromuscular disease trials, and to avoid duplication of this effort. The searchable registry contains information about outcome measures, including 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.
Most recently a detailed record for the AMPS, Assessment of Motor and Process Skills; an observational assessment of an individual's ability to perform chosen, familiar and life relevant activities of daily living was added to the ROM.
Additionally a number of records were added to the Registry of Outcome Measures (ROM). Some highlights are provided below for your information.
Upper Limb Functional Items: For anyone interested in upper limb functional items we've added two new stage 1 records (Name + Reference) in this area: the Assisting Hand Assessment (AHA) and the Manual Ability Classification System (MACS). Both records link to the OM websites which contain a range of information from the background of development, to publications concerning vailidity, and much more.
Functional Rating Scales: For those interested in this area, the Muscular Dystrophy Functional Rating Scale was added in February. This is a stage 3 record (substantial descriptive summary) and includes a link to the key reference.
Devices: For those interested in measurements associated with walking, a new device has also been added. Known as DataGait, the device measures gait, with generic application across many diseases. This stage 3 record includes links to additional information as well as the distributors contact details.
Ongoing Work: For anyone interested in myotonic dystrophy, inclusion body myositis and fascioscapulohumeral dystrophy, ROM is presently supporting international collaborative efforts towards the identification of OMs and related information that we hope will serve to inform future discussions and decisions in the selection of OMs. The work on IBM and FSHD is presently focussed mainly at functional items/scales, MMT an QMT. Work in DM has expanded slightly beyond this with the wealth of information being volunteered by the various experts contributing to the discussion. Contributions to this discussion are being added and published via the relevant branch on the Review/Selection tree and we welcome feedback from all experts interested in these areas. If you have any questions about the registry please contact us firstname.lastname@example.org.
Our thanks! to those individuals and groups who have taken the time to contribute these and other records to ROM. Your support and effort is very much appreciated.
New Contributions: We continue to seek the contributions of experts from around the world. If you know of an OM that is used or potentially suitable for application in NMD please tell us about it. All it takes to publish a stage 1 record is the official name of the OM and a key reference or official web site. Just copy and paste the following information into an email with the subject title: New OM for ROM, fill in the missing details, and send it to the email@example.com
OM Abbreviation (if known):
Your Name (including title: Dr, Prof, etc):
We'll check the details, publish references in ROM, and when a record is published we'll add you and your organisation to our list of contributors.
If you've got the expertise in a particular OM and would be willing to contribute more information, we'd love to hear from you and to set you up with an official user account. On average, those with a detailed knowledge of an OM can complete a stage 2 record in about 30 to 45 minutes.
Experts who would like to contribute information to ROM please get in touch with us firstname.lastname@example.org