About ROM
How is ROM Data Populated
Records are are created and maintained using an on-line form and are published with varying degrees of detail (stage 1 records = minimal information, stage 4 records = comprehensive detail). The aim in utilising a staged approach to publication is to get information out to the community as quickly as possible and to then build on this foundation by progressing records through various stages of completion as information comes to hand. Hopefully this will mean that you see both immediate and continuing improvements in access to information.
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 accurate as possible.
It taks less than 5 minutes to add a stage 1 record to the database, while those with expert working knowledge of an outcome measure can add a fairly comprehensive record in 30 minutes to an hour. This information, once published is then freely available to support the efforts of the international NMD research community, hence well worth the effort.
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.
The Tools
ROM contains a number of tools and resources designed to facilitate and support the systematic review and selection of outcome measures for use in trials and studies. These tools don't only provide access to information, but are also designed to support the efforts of groups who are conducting such reviews, be it on a local, national or international basis.
Guidelines: These suggest how one might select outcome measures (OMs) for all types of studies, not just clinical trials, in neuromuscular diseases (NMD). The motivation for producing these guidelines is to ensure that there is an agreed process for choosing OMs that is more likely to result in correct choices being made from all the potentially available OMs in a way that is acceptable to the majority.
Review & Selection Tree: The tree is designed to support the co-ordinated reviews of outcome measures with respect to their application for a specific disease. It aims to record a range of information, from the outcome measures that are being considered in the review, to the final determination of the review. The idea is to make this information available to all members of a review group from a single location and to make the information learned during the review available to other researchers.
Comparison Report: This is a dedicated report engine. It generates a comparison report for two to four outcome measures (OMs), enabling the detail of the OMs to be compared side by side in tabular format.