New recommendation: Standardised collection of patient-reported outcomes (PROs) within the NUM
The NUM Methods & Biosamples Hub (NUM-MB) has issued a recommendation on the standardised collection of Patient-Reported Outcomes (PROs) within the Network of University Medicine. These are details provided by patients themselves regarding their general state of health, quality of life and symptoms.
A common standard for comparable PRO data
Rather than relying on individual questionnaires, the NUM-MB recommends a construct oriented measurement system based on the PROMIS-T metric: a generic core module for crossdisease comparability, supplemented by disease-, intervention- and context specific modules. Guidance in this regard is provided by international standardisation initiatives such as the World Health Organisation (WHO), the Organisation for Economic Co-operation and Development (OECD), the International Consortium for Health Outcomes Measurement (ICHOM) and the Patient-Reported Outcomes Measurement Information System (PROMIS).
Who is this guidance intended for?
It is aimed at all NUM researchers who wish to collect PROs in a standardised manner in clinical trials, registries, cohorts or healthcare projects – as the basis for a future national dataset from real-world healthcare. The PROMIS instruments are provided and methodologically supported in cooperation with the PROMIS National Centre (PNC) Germany.
Contact: pro-beratung@mb.netzwerk-universitaetsmedizin.de
Advice on calls for proposals for clinical trials
The NUM Methods & Biosamples Hub (NUM-MB) has supported researchers in preparing project proposals for BMFTR calls for proposals relating to clinical trials. Together with representatives from NUKLEUS, the NUM Clinical Epidemiology and Study Platform, the NUM-MB facilitated discussions and subsequently provided further advice.
In the process, the required services were identified and compiled for the cost calculations of the planned projects. This enabled the researchers to prepare their applications for submission. The focus included calls for proposals relating to clinical trials of high relevance to patient care, as well as those concerning post-acute infection syndromes (PAIS).
You can find all the information on the NUM Methods & Biosamples Hub here: visit the new sub-website