ERICA: Updated PROMs repository released
The European Rare Disease Research Coordination and Support Action consortium (ERICA) has unveiled the second version of their Patient Reported Outcome Measures (PROMs) Repository. This updated resource, produced in the framework of a collaboration with Orphanet, Mapi Research Trust/ICON, and the ERN EuroBloodNet, is expected to further advance the standardisation of PROMs for rare diseases at the European level.
First released in August 2022, the Repository is an open-access tool which provides a centralised point of access for information on patient-centred outcome measures of relevance for rare disease research. As of June 2023, it has been updated to include Observer-Reported Outcome Measures (ObsROMs), which better cover paediatric populations. In total, the Repository now includes 1080 different measures including PROMs and ObsROMs specific to rare diseases, and those which measure quality of life.
PROMs refer to measurement tools used by patients to provide information on their own health status and quality of life. They are a key part of patient-centred research and care, and can be used both to inform care pathways at the patient level, and more broadly to support research and policy-making. ObsROMs, which are reported by someone other than the patient or a healthcare professional, can be of similar value. They are particularly useful in cases where the patient is unable to report on their own condition, such as in the case of infants or individuals who are cognitively impaired.
The updated Repository can be accessed on ERICA’s website, and users can filter the list of measures based on characteristics such as the disease name/OrphaCode, or the type of measure.
Sample search using the disease name "Rett syndrome" and corresponding OrphaCode ORPHA:778
To continue developing and growing the Repository, ERICA members are invited to suggest new measures they would like added as they arise.
