For permission to use JWRG’s QGEN and QDIS short-form surveys worldwide, contact the non-profit Mapi Research Trust (MRT). In addition to royalty-free access for academic research, MRT is the source for commercial licenses to use QGEN and QDIS by medical products and pharmaceutical companies, healthcare delivery organizations, health information technology vendors and all other commercial applications. Submit your request to Mapi Research Trust’s ePROVIDE platform.
QGEN is a new survey developed by JWRG to measure eight essential QOL domains, including functioning (physical, role, and social) and feelings (pain, vitality, and emotional well-being). QGEN items improve Medical Outcomes Study (MOS) and other legacy short form items by increasing response category ranges for three functioning domains and constructing an item directly measuring each of the three higher-order feeling domains (mental, vitality and pain) factors. Benefits include greater item efficiency and response categories increasing score range to reduce ceiling effects. QGEN single-item scores are scored to provide unbiased estimates of average SF-36 multi-item profile scores for their eight common QOL domains. QGEN items also yield unbiased estimates of SF-36 physical (PCS) and mental (MCS) summary scores and the SF-6D health utility index. For all forms, higher scores indicate better functioning and well-being. Profiles and summary scores are transformed to have mean=50 and SD=10 in the general US population using 2020 norms. This standardization enables comparability with three decades of population norms, published effect size and minimally important differences, and other interpretation guidelines.
QDIS is a family of more efficient and psychometrically-sound disease specific QOL impact forms with content as comprehensive as the best generic QOL surveys. Single- and multi-item static and adaptive CAT forms of QDIS use disease-specific attributions proven to increase validity and responsiveness to changes in severity of a specific disease or condition, in comparison with general (generic) surveys. QDIS is the first such survey with content and scoring standardized across chronic conditions and normed across diseases in the US chronically ill population (mean=50, SD=10). This standardization enables the first aggregate multiple chronic conditions (MCC) summary QOL impact score.
“This collaboration with MRT comes at a perfect time given the importance of distributing more responsive QOL measures to scholars’ royalty-free and assuring that there will be support for additional translations and continued development from commercial license funds worldwide,” said John Ware, Founder and Chief Science Officer at JWRG.
“We are delighted with this collaboration between Mapi Research Trust and JWRG which will further contribute to the widespread use of the innovative QDIS questionnaire by the scientific community worldwide” added Katrin Conway, Managing Director of MRT.
John Ware Research Group (JWRG) is a privately held company founded in 2009 by John E. Ware, Jr., PhD to standardize and integrate more efficient generic and disease-specific patient-reported outcome (PRO) tools across population health surveys, clinical research and clinical practice worldwide. JWRG maintains its offices in Watertown, Massachusetts. Visit http://jwrginc.com/ for more information.
About Mapi Research Trust:
Mapi Research Trust is a Non-Profit arm of ICON plc and works in collaboration with Academic Researchers, Life-Science Companies and Regulatory bodies. It is the largest curator of Clinical Outcomes Assessments (COAs) and their translations, the largest single COA licensing provider and the most trusted name in distribution of COA instruments exclusively representing over 400 exclusive questionnaires. Visit http://mapi-trust.org/ for more information.