{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T09:13:29Z","timestamp":1788513209388,"version":"build-2803163510"},"reference-count":11,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,6,19]],"date-time":"2026-06-19T00:00:00Z","timestamp":1781827200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,6,19]],"date-time":"2026-06-19T00:00:00Z","timestamp":1781827200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100006093","name":"Patient-Centered Outcomes Research Institute","doi-asserted-by":"publisher","award":["BPS\u20102023C1\u201031041"],"award-info":[{"award-number":["BPS\u20102023C1\u201031041"]}],"id":[{"id":"10.13039\/100006093","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["European J of Haematology"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Sickle cell disease (SCD) is a chronic and life\u2010limiting hemoglobin and systemic vascular disease. While over 1000 people have undergone hematopoietic cell transplantation (HCT) over the last 40\u2009years, long\u2010term disease\u2010specific and health\u2010related quality of life data are lacking. The American Society of Hematology 2021 Guidelines for SCD emphasized the need for more detailed registry data to inform patients and providers with decision\u2010making and practice recommendations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Procedures<\/jats:title>\n                    <jats:p>In January 2021, the Sickle Cell Transplant Advocacy and Research Alliance (STAR) launched Project Sickle Cure (PSC). This multi\u2010center, prospective study of patients who have undergone HCT for SCD includes baseline demographics and SCD\u2010specific post\u2010HCT outcomes, serial neurocognitive testing, health\u2010related quality of life measures, health equity evaluations, a neuroimaging bank, detailed evaluation of neurologic status pre\u2010 and post\u2010transplant, and chronic pain evaluation. A biorepository is in the planning stage of development.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>As of November 2025, 115 participants have enrolled at 18 STAR sites with enrollment ongoing.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>PSC is a STAR prospective study which will address a major gap in our understanding of outcomes post\u2010HCT specific to SCD. WeDecide, a larger study comparing HCT health\u2010related quality of life outcomes to those who receive non\u2010transplant disease modifying therapy (NT\u2010DMT) is in development, and PSC will provide the HCT comparator data. These data will also be highly relevant as other curative and transformative therapies, such as gene therapy, become more widely used.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/ejh.70240","type":"journal-article","created":{"date-parts":[[2026,6,20]],"date-time":"2026-06-20T05:58:29Z","timestamp":1781935109000},"page":"1052-1060","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Project Sickle Cure: A Prospective, International Observational Study of Hematopoietic Cell Transplantation for Sickle Cell Disease"],"prefix":"10.1111","volume":"117","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9380-4347","authenticated-orcid":false,"given":"Gregory M. T.","family":"Guilcher","sequence":"first","affiliation":[{"name":"Section of Pediatric Oncology\/Transplant Alberta Children's Hospital, Cumming School of Medicine, University of Calgary  Calgary Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2019-0887","authenticated-orcid":false,"given":"Allistair","family":"Abraham","sequence":"additional","affiliation":[{"name":"Center for Cancer and Immunology Research, CETI Children's National Hospital  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6053-8521","authenticated-orcid":false,"given":"Staci D.","family":"Arnold","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Center Children's Healthcare of Atlanta and Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-3461-8775","authenticated-orcid":false,"given":"Christine","family":"Camacho\u2010Bydume","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology\/Oncology Joseph M. Sanzari Children's Hospital, Hackensack University Medical Center  Hackensack New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenny","family":"Duong","sequence":"additional","affiliation":[{"name":"University of Calgary  Calgary Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1295-3602","authenticated-orcid":false,"given":"Scott","family":"Gillespie","sequence":"additional","affiliation":[{"name":"Pediatrics Biostatics Core, Department of Pediatrics Emory School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8158-0091","authenticated-orcid":false,"given":"Ann","family":"Haight","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Center Children's Healthcare of Atlanta and Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8933-0046","authenticated-orcid":false,"given":"Monica L.","family":"Hulbert","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Oncology Boston Children's Hospital  Boston Massachusetts USA"},{"name":"Department of Pediatric Oncology Dana\u2010Farber Cancer Institute, Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Naresh","family":"Kumar","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Center Children's Healthcare of Atlanta and Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-6851-8340","authenticated-orcid":false,"given":"Katie","family":"Liu","sequence":"additional","affiliation":[{"name":"Pediatrics Biostatics Core, Department of Pediatrics Emory School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8389-8746","authenticated-orcid":false,"given":"Cherry","family":"Mammen","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Pediatrics BC Children's Hospital  Vancouver Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6735-6111","authenticated-orcid":false,"given":"Aleksandra","family":"Mineyko","sequence":"additional","affiliation":[{"name":"Section of Pediatric Neurology, Department of Pediatrics University of Calgary  Calgary Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Abra","family":"Morgan","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Center Children's Healthcare of Atlanta and Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4780-5642","authenticated-orcid":false,"given":"Alexander","family":"Ngwube","sequence":"additional","affiliation":[{"name":"Texas Children's Hospital\/Baylor College of Medicine  Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4277-7523","authenticated-orcid":false,"given":"Robert S.","family":"Nickel","sequence":"additional","affiliation":[{"name":"Children's National Hospital  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4037-3242","authenticated-orcid":false,"given":"Araby","family":"Roberts","sequence":"additional","affiliation":[{"name":"Department of Oncology University of Calgary  Calgary Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3076-9676","authenticated-orcid":false,"given":"Fiona","family":"Schulte","sequence":"additional","affiliation":[{"name":"Department of Oncology University of Calgary  Calgary Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4550-263X","authenticated-orcid":false,"given":"Stephen","family":"Sands","sequence":"additional","affiliation":[{"name":"Department of Psychiatry &amp; Behavioral Sciences Memorial Sloan Kettering Cancer Center  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3281-2081","authenticated-orcid":false,"given":"Akshay","family":"Sharma","sequence":"additional","affiliation":[{"name":"Department of Bone Marrow Transplantation &amp; Cellular Therapy St Jude Children's Research Hospital  Memphis Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John T.","family":"Horan","sequence":"additional","affiliation":[{"name":"Goslisano Children's Hospital University of Rochester Medical Center  Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1386-6685","authenticated-orcid":false,"given":"Elizabeth O.","family":"Stenger","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Center Children's Healthcare of Atlanta and Emory University School of Medicine  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,6,19]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-3026(23)00096-0"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2022.10233"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.blre.2022.100982"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2021004394C"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpain.2016.12.016"},{"key":"e_1_2_13_7_1","volume-title":"NIH Toolbox","author":"Zelazo P. D.","year":"2013"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X03256005"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-3067"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.2196\/36780"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2016-10-745711"},{"key":"e_1_2_13_12_1","volume-title":"Comparative Effectiveness of MRD HCT and NT\u2010DMT for Pediatric Sickle Cell Disease (WeDecide)","author":"Patient\u2010Centered Outcomes Research Institute (PCORI)","year":"2026"}],"container-title":["European Journal of Haematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ejh.70240","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/ejh.70240","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ejh.70240","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T08:22:53Z","timestamp":1788510173000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ejh.70240"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,19]]},"references-count":11,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2026,10]]}},"alternative-id":["10.1111\/ejh.70240"],"URL":"https:\/\/doi.org\/10.1111\/ejh.70240","archive":["Portico"],"relation":{},"ISSN":["0902-4441","1600-0609"],"issn-type":[{"value":"0902-4441","type":"print"},{"value":"1600-0609","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,19]]},"assertion":[{"value":"2026-03-12","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-06","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-19","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}