Volume 5 Supplement 1

5th European Conference on Rare Diseases (ECRD 2010)

Open Access

Registry of Outcome Measures (ROM); tools supporting review and selection of outcome measures (OMs) for studies and trials

Orphanet Journal of Rare Diseases20105(Suppl 1):P12

https://doi.org/10.1186/1750-1172-5-S1-P12

Published: 19 October 2010

Background

Selecting the right OMs for clinical trials/studies is critical to success. Unless it is done it can be a major barrier to translational research. The choice is best made by systematically reviewing existing OMs to identify suitable measures and inform decisions about adapting existing OMs or creating new ones. ROM helps this effort by offering information on an expanding number of potentially suitable OMs. We have added web-based tools to support the review and selection process.

Method

ROM incorporates:

1) a 'Tree of OMs' - allows the reviewer(s) to record OMs by category as being considered for a specific study or trial

2) a search engine that enables investigators to find potential OMs in ROM

3) a comparison table that displays information about multiple OMs to aid selection

4) a document in progress which will evolve into a Manual for the review and selection of OMs

These web based tools are easily accessible to collaborative groups. They can be open access so that all investigators can see work in progress, avoid duplication of effort, and contribute their views.

Results

These tools have led to the publication of more OM records in ROM and are appreciated by investigators.

Conclusion

These new tools on http://www.researchrom.com will play an important part in helping translational research.

Authors’ Affiliations

(1)
TREAT-NMD & King's College London Room 91.23, King's College Hospital

Copyright

© Auld et al; licensee BioMed Central Ltd. 2010

This article is published under license to BioMed Central Ltd.

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