Background/Purpose: Amplified Musculoskeletal Pain Syndromes (AMPS) are complex pediatric pain conditions affecting an estimated 10% of children. Despite their prevalence and a growing evidence base for effective treatments, there is no standardized data infrastructure to support broader prospective research efforts or to inform more targeted, personalized treatment approaches. To begin addressing this gap, a team of pediatric rheumatologists, pain psychologists, and patient representatives within the Childhood Arthritis and Rheumatology Research Alliance (CARRA) convened to design a pediatric pain registry for AMPS. The group’s objective here was to identify candidates of patient-reported outcome measures for potential inclusion in the registry.

Methods: A multidisciplinary group of 10 members convened in May 2025. The initial phase focused on identifying key pain domains relevant to AMPS assessment, guided by recommendations from the Core Outcomes in Pediatric Persistent Pain (Core-OPPP) Workgroup.  The team met monthly for 6 months and reviewed ten validated pain assessment instruments, evaluating each for feasibility, validity, and relevance to the AMPS population. Following structured discussions, members completed a blinded vote to select the top 50% of tools for further consideration.

Results: A total of 55 votes were cast across the 10 candidate measurement instruments, with members able to select all tools they believed appropriate for inclusion in the registry. The five highest-rated instruments were the Pain and Symptom Assessment Tool (16% of voters), the Numerical Rating Scale (15%), the Patient Global Impression of Change (15%), the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Anxiety 8A (13%), and the Functional Disability Inventory (11%). The remaining instruments—PROMIS Depressive Symptoms 8A, Adolescent Sleep Wake Scale, Bath Adolescent Pain Questionnaire Physical Functioning Scale, the Child Activity Limitations Interview—9-item Short Form, and the Childhood Depression Inventory—Short Form—each received less than 10% of the total votes.

Conclusion: The formation of the Pain Registry working group represents a critical first step toward harmonizing data collection in AMPS research and enabling longitudinal evaluation of pain outcomes and treatment response. The next phase will involve an iterative review of the shortlisted instruments to identify the top three measures for inclusion in the final registry, based on psychometric strength, clinical utility, patient burden, and applicability across clinical settings. Through collaboration among clinicians, researchers, and patient partners, this initiative aims to advance understanding of AMPS, support development of consensus treatment approaches, and ultimately improve the quality of life for affected children and adolescents.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/selection-of-core-measures-in-development-of-a-childhood-arthritis-and-rheumatology-research-alliance-based-pediatric-pain-registry-for-management-of-amplified-musculoskeletal-pain-syndrome/