Auld, Joanne

Rose, Michael

Seyedsadjadi, Reza

Orphanet Journal of Rare Diseases

English

PubMed

Joanne Auld

Michael Rose

Reza Seyedsadjadi

Springer - Publisher Connector

POSTER PRESENTATION Open Access
Registry of Outcome Measures (ROM); tools
supporting review and selection of outcome
measures (OMs) for studies and trials
Joanne Auld*, Michael Rose, Reza Seyedsadjadi
From 5th European Conference on Rare Diseases (ECRD 2010)
Krakow, Poland. 13-15 May 2010
Background
Selecting the right OMs for clinical trials/studies is criti-
cal 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 suita-
ble measures and inform decisions about adapting exist-
ing 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 colla-
borative 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.
Published: 19 October 2010
doi:10.1186/1750-1172-5-S1-P12
Cite this article as: Auld et al.: Registry of Outcome Measures (ROM);
tools supporting review and selection of outcome measures (OMs) for
studies and trials. Orphanet Journal of Rare Diseases 2010 5(Suppl 1):P12.
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* Correspondence: joanne.auld@iop.kcl.ac.uk
TREAT-NMD & King’s College London Room 91.23, 9th Floor, Ruskin Wing,
King’s College Hospital, Denmark Hill, London SE5 9RS, UK
Auld et al. Orphanet Journal of Rare Diseases 2010, 5(Suppl 1):P12
http://www.ojrd.com/content/5/S1/P12
© 2010 Auld et al; licensee BioMed Central Ltd.


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

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