The Patient-Reported Outcomes Measurement Information System (PROMIS) is an NIH-funded initiative to develop and validate patient reported outcomes (PROs) for clinical research and practice. As the initial PROMIS network center, AIR has been at the forefront of developing and implementing PROs to inform research and clinical care. A highly successful National Institutes of Health (NIH) Common Fund initiative, PROMIS helped standardize assessment of PROs, such as pain, fatigue, physical functioning, and emotional distress, that have a major impact on people’s quality of life across a variety of chronic diseases.
AIR developed a strategic plan and research agenda to guide the PROMIS network of clinical research sites; monitored and reviewed clinical research site study protocols; created a real-time data monitoring system; participated in research to resolve difficult assessment issues; and formed alliances with academic research partners, industry stakeholders, quality improvement experts, and others interested in PRO measures. AIR is a member of NIH’s HealthMeasures team, the successor to the PROMIS initiative, and on behalf of the National Heart, Lung, and Blood Institute, developed the Adult Sickle Cell Quality of Life Measurement Information System, or ASCQ-Me.