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. 2025 Jun 10;2(1):yoaf019.
doi: 10.1093/jscdis/yoaf019. eCollection 2025.

Recommended measurement protocols for sickle cell disease in the PhenX toolkit: psychosocial factors and social determinants of health

Lori E Crosby  1   2 , Desireé N Williford  1   2 , Allison A King  3 , Jerlym S Porter  4 , Sherif M Badawy  5   6 , Dominique Bulgin  7 , Steven J Hardy  8   9 , Staci D Arnold  10   11 , Marsha Treadwell  12   13 , Wayne Huggins  14 , Cataia Ives  14 , Marian Sullivan  14 , Carol M Hamilton  14
Affiliations

Recommended measurement protocols for sickle cell disease in the PhenX toolkit: psychosocial factors and social determinants of health

Lori E Crosby et al. J Sick Cell Dis. .

Abstract

Objectives: Consensus Measures for Phenotypes and eXposures (PhenX) Toolkit (https://www.phenxtoolkit.org/) is a web-based catalog of recommended measurement protocols and associated bioinformatics tools to assist with study design and facilitate cross-study data integration and analyses. Before February 2023 (v.44), protocols specific to sickle cell disease did not address key psychosocial factors or social determinants of health that impact care and outcomes. This paper describes the protocol selection process and final recommendations to address this limitation.

Methods: To identify protocols for the new collection, the PhenX Sickle Cell Disease Research and Scientific Panel provided a list of scope elements for consideration and assembled a panel with relevant expertise in psychology, behavioral science, hematology, and nursing to form a Psychosocial and Social Determinants of Health Working Group. A consensus process prioritized and identified the scope elements and protocols. The 19 scope elements and related protocols initially selected were shared with the scientific community for public comment, informing final selections.

Results: The final 15 recommended protocols assess transition readiness, self-management, impact of early aging, stigma, trust in medical care and research, resilience, spirituality, and stress responses. Another 8 protocols were selected as supplemental information. Sickle cell-relevant social determinants of health protocols were also cross-listed from other PhenX Toolkit Collections.

Conclusion: Recommended protocols enhance the existing Sickle Cell Disease Research Collections and the individual and structural Social Determinants of Health Collections in the PhenX Toolkit. Furthermore, the protocols will promote using validated measurement tools to investigate psychosocial factors and social determinants in sickle cell disease.

Keywords: PhenX toolkit; assessment measures; behavioral; psychosocial; sickle cell disease; social determinants of health.

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Conflict of interest statement

The authors have no disclosures relevant to this manuscript. Other disclosures include L.E.C. has contributed to a Novartis, speaker series, for which she received an honorarium; Pfizer, serves on an advisory board, and receives payment from Professional Resource Exchange for a book she co-authored. A.K. served as a consultant for and received research funding from Global Blood Therapeutics and has been a consultant for Cigna Healthcare. J.P. served as a consultant for Forma Therapeutics. S. H. served as a consultant for Vertex Pharmaceuticals. S. B. has served as a consultant for Bluebird Bio, Inc., Sanofi, Vertex Pharmaceuticals, Inc., Bristol-Myers Squibb (BMS), CHIESI Farmaceutici S.p.A, Forma Therapeutics, Global Blood Therapeutics, and received research funding from Pfizer, Inc. The remaining authors declare no additional financial interests. L.E.C. is an Editorial Board Member for Journal of Sickle Cell Disease. Full peer-review for this manuscript was handled by Journal of Sickle Cell Disease Associate Editor Wally Smith. All (other) authors declare no conflict of interest.

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