{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T16:38:19Z","timestamp":1790613499782,"version":"4.1.0"},"reference-count":24,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2025,6,14]],"date-time":"2025-06-14T00:00:00Z","timestamp":1749859200000},"content-version":"vor","delay-in-days":164,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"National Human Genome Research Institute and a Biomedical Knowledgebase","award":["U24HG012556"],"award-info":[{"award-number":["U24HG012556"]}]},{"DOI":"10.13039\/100000051","name":"National Human Genome Research Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000051","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,1,17]]},"abstract":"<jats:title>Lay Summary<\/jats:title>\n               <jats:p>The PhenX Toolkit is an online resource that provides recommended measurement protocols to help with study design and data analysis. It lacked specific protocols for Sickle Cell Disease (SCD) related to psychosocial factors and social determinants of health (SDoH), which are important for improving SCD care. This paper outlines the process of selecting these protocols and presents final recommendations. A panel of experts in psychology, behavioral science, hematology, and nursing used a consensus method to identify and agree on the most important protocols. They initially developed 19 scope elements and reached consensus on 19 protocols, which were then shared for public comment. The final recommendations include 15 protocols that assess various indicators such as transition readiness, self-management, early aging impact, stigma, trust in medical care, resilience, spirituality, and stress responses. Additionally, 8 protocols were selected as supplemental information, and existing SDoH protocols in the Toolkit relevant to SCD were cross-listed. These new protocols enhance the SCD Research Collections and the SDoH Collections in the PhenX Toolkit, promoting the use of validated tools to study psychosocial factors and SDoH in SCD.<\/jats:p>","DOI":"10.1093\/jscdis\/yoaf019","type":"journal-article","created":{"date-parts":[[2025,6,14]],"date-time":"2025-06-14T12:37:05Z","timestamp":1749904625000},"source":"Crossref","is-referenced-by-count":2,"title":["Recommended measurement protocols for sickle cell disease in the PhenX toolkit: psychosocial factors and social determinants of health"],"prefix":"10.1093","volume":"2","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6656-7745","authenticated-orcid":false,"given":"Lori E","family":"Crosby","sequence":"first","affiliation":[{"name":"Division of Behavioral Medicine and Clinical Psychology, Children's Hospital Medical Center , Cincinnati, OH, 45229,","place":["United States"]},{"name":"Department of Pediatrics, University of Cincinnati College of Medicine , Cincinnati, OH, 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