Searching for all the information you need about PRO Questionnaires

Two types of quick information searches are available:

Standard Information Searches
Standard Advanced Searches

Standard Information Searches

These practical information searches about health outcomes instruments are focused on, but not limited to:

Searches for the availability of questionnaires and their translations
Information about the methodology of linguistic validation used to generate PRO translations, including checking of their consistency with official originals and harmonization across language versions
Supplying of questionnaires or translations (based on publicly available information or special authorizations by owners/authors)
Contacts with developers for specific information on a questionnaire (e.g., scoring)
Contacts with developers and/or other licensing authorities (e.g., tests publishers, journals) to learn conditions of access and use of questionnaires and translations
Handling of licensing for questionnaires on behalf of the users (including contacts with legal departments)
Lists of internal bibliographic references for a disease or a questionnaire

In 2011, over 5,000 Standard Information Searches from pharmaceutical companies, academic researchers, physicians, associations, and international organizations were handled by the PRO Information Support team (an eight-person team).

Standard Advanced Searches

These are generally large-volume requests (i.e., biomedical databases, MRT unique PRO Library, Mapi’s specialized websites [PROQOLID, PROLabels]), requiring the review of the relevant documentation and the establishment of a report.

These projects may comprise one or more of the following:

An Instrument Inventory (PROs, ClinROs, and ObsRO) in a particular disease

A review of PRO claims granted by FDA or EMA in a particular disease
A review of published or ongoing clinical trials or observational studies to identify PRO endpoints
A review of PROs concepts/questionnaires recommended by health authorities or learned societies

The description of PRO questionnaires characteristics (including measurement properties)