{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T20:55:26Z","timestamp":1777928126218,"version":"3.51.4"},"reference-count":36,"publisher":"SAGE Publications","issue":"10","license":[{"start":{"date-parts":[[2020,10,1]],"date-time":"2020-10-01T00:00:00Z","timestamp":1601510400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2020,10,1]],"date-time":"2020-10-01T00:00:00Z","timestamp":1601510400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["OMICS: A Journal of Integrative Biology"],"published-print":{"date-parts":[[2020,10,1]]},"abstract":"<jats:p>Sickle cell disease (SCD) is one of the most common blood disorders impacting planetary health. Over 300,000 newborns are diagnosed with SCD each year globally, with an increasing trend. The sickle cell disease ontology (SCDO) is the most comprehensive multidisciplinary SCD knowledge portal. The SCDO was collaboratively developed by the SCDO working group, which includes experts in SCD and data standards from across the globe. This expert review presents highlights and lessons learned from the fourth SCDO workshop that marked the beginning of applications toward planetary health impact, and with an eye to empower and cultivate multisite SCD collaborative research. The workshop was organized by the Sickle Africa Data Coordinating Center (SADaCC) and attended by 44 participants from 14 countries, with 2 participants connecting remotely. Notably, from the standpoint of democratizing and innovating scientific meeting design, an SCD patient advocate also presented at the workshop, giving a broader real-life perspective on patients' aspirations, needs, and challenges. A major component of the workshop was new approaches to harness SCDO to harmonize data elements used by different studies. This was facilitated by a web-based platform onto which participants uploaded data elements from previous or ongoing SCD-relevant research studies before the workshop, making multisite collaborative research studies based on existing SCD data possible, including multisite cohort, SCD global clinical trials, and SCD community engagement approaches. Trainees presented proposals for systematic literature reviews in key SCD research areas. This expert review emphasizes potential and prospects of SCDO-enabled data standards and harmonization to facilitate large-scale global SCD collaborative initiatives. As the fields of public and global health continue to broaden toward planetary health, the SCDO is well poised to play a prominent role to decipher SCD pathophysiology further, and co-design diagnostics and therapeutics innovation in the field.<\/jats:p>","DOI":"10.1089\/omi.2020.0153","type":"journal-article","created":{"date-parts":[[2020,10,6]],"date-time":"2020-10-06T16:21:12Z","timestamp":1602001272000},"page":"559-567","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":9,"title":["The Sickle Cell Disease Ontology: Enabling Collaborative Research and Co-Designing of New Planetary Health Applications"],"prefix":"10.1177","volume":"24","author":[{"given":"Victoria","family":"Nembaware","sequence":"first","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gaston K.","family":"Mazandu","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jade","family":"Hotchkiss","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jean-Michel","family":"Safari Serufuri","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jill","family":"Kent","sequence":"additional","affiliation":[{"name":"Sickle Cell Programme, Muhimbili University of Health and Allied Sciences (MUHAS), Dar es Salaam, Tanzania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andre Pascal","family":"Kengne","sequence":"additional","affiliation":[{"name":"Non-Communicable Diseases Research Unit, South African Medical Research Council, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kofi","family":"Anie","sequence":"additional","affiliation":[{"name":"London North West University Healthcare NHS Trust and Imperial College London, London, UK."},{"name":"Sickle Cell Disease Genomics Network of Africa (SickleGenAfrica), University of Ghana, Accra, Ghana."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nchangwi Syntia","family":"Munung","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daima","family":"Bukini","sequence":"additional","affiliation":[{"name":"Sickle Cell Programme, Muhimbili University of Health and Allied Sciences (MUHAS), Dar es Salaam, Tanzania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Valentina Josiane Ngo","family":"Bitoungui","sequence":"additional","affiliation":[{"name":"Department of Microbiology, Hematology and Immunology, Faculty of Medicine and Pharmaceutical Sciences of the University of Dschang, Dschang, Cameroon."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deogratias","family":"Munube","sequence":"additional","affiliation":[{"name":"Department of Paediatric and Child Health, Makerere University\/Mulago National Referral Hospital, Kampala, Uganda."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Uzima","family":"Chirwa","sequence":"additional","affiliation":[{"name":"University Teaching Hospitals\u2014Children's Hospital, University of Zambia, School of Medicine, Lusaka, Zambia."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Chunda-Liyoka","sequence":"additional","affiliation":[{"name":"University Teaching Hospitals\u2014Children's Hospital, University of Zambia, School of Medicine, Lusaka, Zambia."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Agnes","family":"Jonathan","sequence":"additional","affiliation":[{"name":"Sickle Cell Programme, Muhimbili University of Health and Allied Sciences (MUHAS), Dar es Salaam, Tanzania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miriam V.","family":"Flor-Park","sequence":"additional","affiliation":[{"name":"Onco-hematology Unit, Instituto da Crian\u00e7a, Hospital das Cl\u00ednicas, Universidade de S\u00e3o Paulo, S\u00e3o Paulo, Brazil."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kevin Kum","family":"Esoh","sequence":"additional","affiliation":[{"name":"Department of Biochemistry, Faculty of Science, Jomo Kenyatta University of Agriculture and Technology, Juja, Kenya."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mario","family":"Jonas","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Khuthala","family":"Mnika","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chandr\u00e9","family":"Oosterwyk","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Upendo","family":"Masamu","sequence":"additional","affiliation":[{"name":"Sickle Cell Programme, Muhimbili University of Health and Allied Sciences (MUHAS), Dar es Salaam, Tanzania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jack","family":"Morrice","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Annette","family":"Uwineza","sequence":"additional","affiliation":[{"name":"University of Rwanda, School of Medicine and Pharmacy, Kigali, Rwanda."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arthemon","family":"Nguweneza","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kambe","family":"Banda","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isaac","family":"Nyanor","sequence":"additional","affiliation":[{"name":"Kumasi Centre for Sickle Cell Disease, Komfo Anokye Teaching Hospital, Accra, Ghana."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David Nana","family":"Adjei","sequence":"additional","affiliation":[{"name":"Sickle Cell Disease Genomics Network of Africa (SickleGenAfrica), University of Ghana, Accra, Ghana."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nathan Edward","family":"Siebu","sequence":"additional","affiliation":[{"name":"Sickle Cell Disease Genomics Network of Africa (SickleGenAfrica), University of Ghana, Accra, Ghana."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Malula","family":"Nkanyemka","sequence":"additional","affiliation":[{"name":"Sickle Cell Programme, Muhimbili University of Health and Allied Sciences (MUHAS), Dar es Salaam, Tanzania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Patience","family":"Kuona","sequence":"additional","affiliation":[{"name":"University of Zimbabwe College of Health Sciences, Harare, Zimbabwe."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bamidele O.","family":"Tayo","sequence":"additional","affiliation":[{"name":"Department of Public Health Sciences, Parkinson School of Health Sciences and Public Health, Loyola University Chicago, Maywood, Illinois, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew","family":"Campbell","sequence":"additional","affiliation":[{"name":"Division of Hematology, Center for Cancer and Blood Disorders, Children's National Medical Center, George Washington University School of Medicine and Health Sciences, Washington, DC, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Assaf P.","family":"Oron","sequence":"additional","affiliation":[{"name":"Maternal, Newborn and Child Health, Institute for Disease Modeling, Bellevue, Washington, USA."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Obiageli E.","family":"Nnodu","sequence":"additional","affiliation":[{"name":"Centre of Excellence for Sickle Cell Disease Research and Training, University of Abuja, Abuja, Nigeria."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vivian","family":"Painstil","sequence":"additional","affiliation":[{"name":"Department of Child Health, Komfo Anokye Teaching Hospital, Kumasi, Ghana."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie","family":"Makani","sequence":"additional","affiliation":[{"name":"Sickle Cell Programme, Muhimbili University of Health and Allied Sciences (MUHAS), Dar es Salaam, Tanzania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicola","family":"Mulder","sequence":"additional","affiliation":[{"name":"Computational Biology Division, Faculty of Health Sciences, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ambroise","family":"Wonkam","sequence":"additional","affiliation":[{"name":"Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"on behalf of the Sickle Cell Disease Ontology Working Group","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2020,10,5]]},"reference":[{"key":"e_1_3_4_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/HJH.0b013e3280dce59e"},{"key":"e_1_3_4_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(12)62125-4"},{"key":"e_1_3_4_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-8587(15)00076-5"},{"key":"e_1_3_4_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2214-109X(14)70283-9"},{"key":"e_1_3_4_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.15462"},{"key":"e_1_3_4_7_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2018GS112321"},{"key":"e_1_3_4_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jsxm.2019.09.012"},{"key":"e_1_3_4_9_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016-2642"},{"key":"e_1_3_4_10_1","first-page":"36","article-title":"Strategies for Increasing the Efficacy of Collaborative Grant Writing Groups in Preparing Federal Proposals","volume":"44","author":"Dopke L","year":"2013","unstructured":"Dopke L, , and Crawley W. (2013). Strategies for Increasing the Efficacy of Collaborative Grant Writing Groups in Preparing Federal Proposals. J Research Adminis, 44, 36\u201361.","journal-title":"J Research Adminis"},{"key":"e_1_3_4_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2019.06.013"},{"key":"e_1_3_4_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/database\/baz118"},{"key":"e_1_3_4_13_1","doi-asserted-by":"publisher","DOI":"10.1093\/inthealth\/ihx036"},{"key":"e_1_3_4_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(14)60409-8"},{"key":"e_1_3_4_15_1","doi-asserted-by":"publisher","DOI":"10.3390\/genes10120960"},{"key":"e_1_3_4_16_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1715474"},{"key":"e_1_3_4_17_1","doi-asserted-by":"publisher","DOI":"10.2337\/dc11-1588"},{"key":"e_1_3_4_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-8587(13)70103-7"},{"key":"e_1_3_4_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1753-0407.2009.00028.x"},{"key":"e_1_3_4_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)31615-X"},{"key":"e_1_3_4_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-3026(20)30006-5"},{"key":"e_1_3_4_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.gheart.2017.01.005"},{"key":"e_1_3_4_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.atg.2016.03.005"},{"key":"e_1_3_4_24_1","doi-asserted-by":"publisher","DOI":"10.3389\/fgene.2019.00943"},{"key":"e_1_3_4_25_1","unstructured":"NIH launches new collaboration to develop gene-based cures for sickle cell disease and HIV on global scale | National Institutes of Health (NIH). (2020). https:\/\/www.nih.gov\/news-events\/news-releases\/nih-launches-new-collaboration-develop-gene-based-cures-sickle-cell-disease-hiv-global-scale Accessed August21 2020."},{"key":"e_1_3_4_26_1","doi-asserted-by":"publisher","DOI":"10.1089\/omi.2019.0175"},{"key":"e_1_3_4_27_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.1001484"},{"key":"e_1_3_4_28_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00467-018-3948-9"},{"key":"e_1_3_4_29_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.40665"},{"key":"e_1_3_4_30_1","doi-asserted-by":"publisher","DOI":"10.1089\/omi.2019.0020"},{"key":"e_1_3_4_31_1","unstructured":"Sickle Cell Disease Ontology Working Group. (2015). NCBO BioPortal. https:\/\/bioportal.bioontology.org\/ontologies\/SCDO Accessed August21 2020."},{"key":"e_1_3_4_32_1","unstructured":"Sickle Cell Disease Ontology Working Group. (2017a). GitHub\u2014scdodev\/scdo-ontology: Sickle Cell Disease Ontology. https:\/\/github.com\/scdodev\/scdo-ontology Accessed August21 2020."},{"key":"e_1_3_4_33_1","unstructured":"Sickle Cell Disease Ontology Working Group. (2017b). Sickle Cell Disease Ontology. https:\/\/www.ebi.ac.uk\/ols\/ontologies\/scdo Accessed August21 2020."},{"key":"e_1_3_4_34_1","unstructured":"Sickle Cell Disease Ontology Working Group. (2017c). Sickle Cell Disease Ontology Project\u2014SCDO. http:\/\/scdontology.h3abionet.org\/wordpress Accessed March14 2020."},{"key":"e_1_3_4_35_1","unstructured":"SickleGeneAfrica. (2020). SickleGenAfrica | WAGMC. https:\/\/wagmc.org\/research\/sickle-cell-disease\/sicklegenafrica\/index.php Accessed August21 2020."},{"key":"e_1_3_4_36_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pntd.0002120"},{"key":"e_1_3_4_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(15)60901-1"}],"container-title":["OMICS: A Journal of Integrative Biology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1089\/omi.2020.0153","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/omi.2020.0153","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/omi.2020.0153","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T23:04:22Z","timestamp":1777676662000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1089\/omi.2020.0153"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,10,1]]},"references-count":36,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2020,10,1]]}},"alternative-id":["10.1089\/omi.2020.0153"],"URL":"https:\/\/doi.org\/10.1089\/omi.2020.0153","relation":{},"ISSN":["1536-2310","1557-8100"],"issn-type":[{"value":"1536-2310","type":"print"},{"value":"1557-8100","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,10,1]]}}}