TY - JOUR
T1 - The Sickle Cell Disease Ontology
T2 - Enabling Collaborative Research and Co-Designing of New Planetary Health Applications
AU - Nembaware, Victoria
AU - Mazandu, Gaston K.
AU - Hotchkiss, Jade
AU - Serufuri, Jean Michel Safari
AU - Kent, Jill
AU - Kengne, Andre Pascal
AU - Anie, Kofi
AU - Munung, Nchangwi Syntia
AU - Bukini, Daima
AU - Bitoungui, Valentina Josiane Ngo
AU - Munube, Deogratias
AU - Chirwa, Uzima
AU - Chunda-Liyoka, Catherine
AU - Jonathan, Agnes
AU - Flor-Park, Miriam V.
AU - Esoh, Kevin Kum
AU - Jonas, Mario
AU - Mnika, Khuthala
AU - Oosterwyk, Chandré
AU - Masamu, Upendo
AU - Morrice, Jack
AU - Uwineza, Annette
AU - Nguweneza, Arthemon
AU - Banda, Kambe
AU - Nyanor, Isaac
AU - Adjei, David Nana
AU - Siebu, Nathan Edward
AU - Nkanyemka, Malula
AU - Kuona, Patience
AU - Tayo, Bamidele O.
AU - Campbell, Andrew
AU - Oron, Assaf P.
AU - Nnodu, Obiageli E.
AU - Painstil, Vivian
AU - Makani, Julie
AU - Mulder, Nicola
AU - Wonkam, Ambroise
N1 - Publisher Copyright:
© Victoria Nembaware, et al., 2020. Published by Mary Ann Liebert, Inc.
PY - 2020/10/1
Y1 - 2020/10/1
N2 - 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.
AB - 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.
KW - Global Clinical Trial Design
KW - Sickle Africa Data Coordinating Center
KW - SickleInAfrica
KW - data harmonization
KW - planetary health
KW - sickle cell disease
KW - sickle cell disease ontology
UR - https://www.scopus.com/pages/publications/85092613918
U2 - 10.1089/omi.2020.0153
DO - 10.1089/omi.2020.0153
M3 - Review article
C2 - 33021900
AN - SCOPUS:85092613918
SN - 1536-2310
VL - 24
SP - 559
EP - 567
JO - OMICS A Journal of Integrative Biology
JF - OMICS A Journal of Integrative Biology
IS - 10
ER -