The Arthritis, Rheumatism and Aging Medical Information System (ARAMIS): still young at 30 years

Area of Science:

• Rheumatology
• Chronic Disease Epidemiology
• Health Outcomes Research

Background:

• Chronic diseases pose significant public health challenges, necessitating robust data collection for understanding risk factors and clinical trajectories.
• Patient-reported outcomes (PROs) are crucial for capturing patient experiences, including disability, pain, and treatment side effects.
• Longitudinal databanks are essential for studying the natural history and management of chronic conditions.

Purpose of the Study:

• To highlight the foundational role of the ARAMIS databank in establishing large-scale, longitudinal collection of patient-reported outcome data.
• To underscore the impact of ARAMIS on advancing the understanding and treatment of various chronic diseases, particularly in rheumatology.
• To demonstrate the evolution of PRO data collection and its integration into modern clinical research infrastructure.

Main Methods:

• Established in the mid-1970s, ARAMIS pioneered the concept of a chronic disease databank with consecutive patient cohorts.
• Utilized the Health Assessment Questionnaire (HAQ), a validated PRO instrument, to gather comprehensive patient-centered data.
• Facilitated over 900 peer-reviewed studies, contributing significantly to rheumatology and related fields.

Main Results:

• ARAMIS has generated a vast body of knowledge, leading to improved treatment strategies and health outcomes in conditions such as rheumatoid arthritis, osteoarthritis, and scleroderma.
• The databank has been instrumental in understanding drug side effects and the impact of aging on chronic disease patients.
• ARAMIS's pioneering work laid the groundwork for current initiatives like the NIH's Patient Reported Outcome Measurement Information System (PROMIS).

Conclusions:

• ARAMIS has been a pivotal resource in chronic disease research, demonstrating the value of longitudinal PRO data.
• The databank's contributions have significantly enhanced clinical practice, cost-effectiveness, and quality of life for patients with chronic conditions.
• The legacy of ARAMIS continues through its participation in and influence on contemporary clinical research infrastructure, such as PROMIS.