Sickle Cell Disease Neglect: A Mismatch Between Burden and Research in Africa

Peter Eyong Ebot; Randolf Fuanghene Wefuan; Jacob Muruhukye; Rita Ewah Mbah; Enu-Ma Obi-Asu; Spritney Nashua Ninpa; Liza Ting Tata; Rhoda Chikula; Grace Kemigisha; Gloria Margaret Nanono; Geofrey Emesu; Janepher Nabaasa; Ebere Olive Nwanja

Vol. 4 No. 1 (2026), Methods Note

Vol. 4 No. 1 (2026)

Sickle Cell Disease Neglect: A Mismatch Between Burden and Research in Africa

Methods Note

Published 2026-06-06

Peter Eyong Ebot

Department of Public Health and Hygiene, Faculty of Health Sciences, University of Buea, P.O Box 63, Buea, Cameroon

https://orcid.org/0009-0004-2964-1634

Randolf Fuanghene Wefuan

Department of Public Health and Hygiene, Faculty of Health Sciences, University of Buea, P.O Box 63, Buea, Cameroon

Jacob Muruhukye

School of Public Health, Makerere University, Uganda

https://orcid.org/0009-0003-7534-7674

Rita Ewah Mbah

Department of Public Health and Hygiene, Faculty of Health Sciences, University of Buea, P.O Box 63, Buea, Cameroon

Enu-Ma Obi-Asu

Department of Public Health and Hygiene, Faculty of Health Sciences, University of Buea, P.O Box 63, Buea, Cameroon

Spritney Nashua Ninpa

Department of Public Health and Hygiene, Faculty of Health Sciences, University of Buea, P.O Box 63, Buea, Cameroon

Liza Ting Tata

Department of Public Health and Hygiene, Faculty of Health Sciences, University of Buea, P.O Box 63, Buea, Cameroon

Rhoda Chikula

School of Public Health, Makerere University, Uganda

https://orcid.org/0009-0002-9706-9866

Grace Kemigisha

School of Public Health, Makerere University, Uganda

https://orcid.org/0009-0006-4752-5877

Gloria Margaret Nanono

School of Public Health, Makerere University, Uganda

https://orcid.org/0009-0008-1714-2415

Geofrey Emesu

School of Public Health, Makerere University, Uganda

https://orcid.org/0009-0003-0271-3098

Janepher Nabaasa

School of Public Health, Makerere University, Uganda

https://orcid.org/0009-0003-5503-0282

Ebere Olive Nwanja

Department of obstetrics and Gynecology, Alex Ekwueme Federal University teaching hospital, Abakaliki Nigeria

https://orcid.org/0009-0005-1610-2401

PDF

How to Cite

Ebot, P. E., Wefuan, R. F., Muruhukye, J., Mbah, R. E., Obi-Asu , E.-M., Ninpa, S. N., … Nwanja, E. O. (2026). Sickle Cell Disease Neglect: A Mismatch Between Burden and Research in Africa. Synthēsis, 4(1). Retrieved from https://synthesis-medicine.org/index.php/journal/article/view/78

Abstract

In the burden-versus-investment landscape of African research, does the distribution of sickle cell disease trials reveal a systematic research gap, despite sickle cell disease affecting more Africans than any other genetic condition [1,2]? This cross-sectional audit used ClinicalTrial.gov records through April 2026, covering 23,87 African and 190,644 United States (US) interventional trials registered. We computed the rate ration comparing Africa to other regions as primary outcome using metadata for each nation. Africa recorded 9 sickle cell trials (0.0% of its portfolio) compared with 574 in US, indicating a 0.02-fold disparity in per-population investment. The Theil index of 1.288 indicated high between country inequality, with decomposition showing most disparity arising from inter-regional gaps. These findings suggest research activities do not align with disease burden, with Africa receiving minimal trial attention relative to need. These results may be limited by the reliance on a single trail registry (ClinicalTrial.gov), which may omit locally registered African studies.

PDF

References

1. Piel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN. Global Burden of Sickle Cell Anaemia in Children under Five, 2010–2050: Modelling Based on Demographics, Excess Mortality, and Interventions. PLOS Medicine. 2013;10(7):e1001484.

2. Ware RE, Montalembert M de, Tshilolo L, Abboud MR. Sickle cell disease. The Lancet. 2017;390(10091):311–23.

This work is licensed under a Creative Commons Attribution 4.0 International License.

Copyright (c) 2026 Peter Eyong Ebot, Randolf Fuanghene Wefuan, Jacob Muruhukye, Rita Ewah Mbah, Enu-Ma Obi-Asu , Spritney Nashua Ninpa, Liza Ting Tata , Rhoda Chikula, Grace Kemigisha , Gloria Margaret Nanono , Geofrey Emesu, Janepher Nabaasa , Ebere Olive Nwanja

Most read articles by the same author(s)

Adrine Nyamwiza, Olivia Amumpaire , Joanitah Namatovu, Felix Awuriki Kofi, Justine Kirabo, Natinael Berhane yeshanew, Edith Kanyesigye, Joy Osifo, Alice Namiiro Martha, Bitness Lyabagaga, Chikosa Kumbukani , Ronnie Ssenfuma, Bruce Tukamushaba, Shamim Nabidda, Amina Mohamud Fidow, Rhoda Chikula, Ruchius Philbert, Fadumo Said Hassan, Njeodo Njongang Vigny, Christine Muhumuza , Michael Bosiako Antwi , Technology Transfer & Capacity Building: A Forensic Audit of Clinical Trial Equity in Uganda , Synthēsis: Vol. 2 No. 2 (2026): Volume 2
Peter Eyong Ebot, Jacob Muruhukye, James Mukiibi, Spritney Nashua Ninpa , Christopher Tibamwenda, Meldwinel Ayuk , Vahid Esangaya Ntoung-Mbi , Endurance Lum Ambe, Rhoda Chikula, Paul Brian Mukisa, Grace Kemigisha , Gloria Margaret Nanono , Geofrey Emesu , Muhammad Murtala Yusuf, Ronald Bwambale Ronald, Janepher Nabaasa , Nwanja Ebere Olive, Prossy Nabateregga , Community advisory structure in African clinical trials: A registry-based analysis , Synthēsis: Vol. 3 No. 1 (2026): Volume 3
Fadumo Said Hassan , Charles Bafaki, Kumbukani Chikosa, Kirabo Justine, Derrick Tumwesigye , Anna Nakirabira , Mukisa Paul Brian, Tulengerayo Joshua, Muhammad Murtala Yusuf , Joy Osifo, Ssenfuma Ronnie , Amina Mohamud Fidow, Rhoda Chikula, Adrine Nyamwiza, Christine Muhumuza, Ruchius Philbert, Kirabo Jireh , Musoke Muhammad , Munyole Samuel , Sebudde Nicholus, Eghaghe Osadebamwen Nibokun , Natinael Berhane, Tukamushaba Bruce, Shamim Nabidda, Amumpaire Olivia , Kanyesigye Edith , Bitness Lyabagaga, Njeodo Njongang Vigny , Predatory Journal Risk and Structural Inequities in African Research Publishing: Implications for Uganda , Synthēsis: Vol. 6 No. 1 (2026): Volume 6
Michael Bosiako Antwi, Njeodo Njongang Vigny , Shamim Nabidda , Tukamushaba Bruce , Christine Muhumuza , Fadumo Said Hassan , Ruchius Philbert, Rhoda Chikula , Amina Mohamud Fidow , Ssenfuma Ronnie , WHO Alignment and Disease Burden Gaps , Synthēsis: Vol. 3 No. 1 (2026): Volume 3
Musoke Muhammad, Ivan Mutyaba, Huzaifah Mutyaba, Tom Okade, Martina Uisso, Shamim Nabidda, Tukamushaba Bruce, Eghaghe Osadebamwen Nibokum, Munyole Samuel, Kirabo Jireh, Ruchius Philbert, Sebudde Nicholus, Amumpaire Olivia, Njeodo Njongang Vigny, Michael Bosiako Antwi, Christine Muhumuza, Fadumo Said Hassan, Rhoda Chikula, Amina Mohamud Fidow, Anna Nakirabira, Mukisa Paul Brian, Natinael Berhane, Tulengerayo Joshua, Muhammad Murtala Yusuf, Joy Osifo, Ssenfuma Ronnie, Informed Consent Language and Structural Inequity in African Clinical Trial Governance: A Cross-Sectional Audit , Synthēsis: Vol. 7 No. 1 (2026): Volume 7
Samuel Munyole, Alice Martha Namiiro, Bitness Edward Lyabagaga, Edith Kanyesigye, Joanitah Namatovu, Olivia Amumpaire, Nicholus Sebudde, Muhammad Musoke, Jireh Kirabo, Anna Nakirabira, Eghaghe Osadebamwen Nibokun, Bruce Tukamushaba, Shamim Nabidda, Njeodo Njongang Vigny, Micheal Bosaiko, Christine Muhumuza, Fadumo Said Hassan, Ruchius Philbert, Rhoda Chikula, Amina Mohamud Fidow, Ronnie Ssenfuma, Joy Osifo, Muhammad Murtala Yusuf, Joshua Tulengerayo, Natineal Berhane, Paul Brian Mukisa, Adrine Nyamwiza, Network Centrality and Research Sovereignty in African Clinical Trials: Evidence from a Global Registry Analysis , Synthēsis: Vol. 7 No. 1 (2026): Volume 7
Geofrey Emesu, Lauritta Chinezaekpere Ndufeiya, Everlyn Nakuya, Ronald Bwambale, Peter Eyong Ebot, Gloria Margaret Nanono, Global RCT Equity: Africa vs. Europe , Synthēsis: Vol. 8 No. 1 (2026): Volume 8
Michael Antwi Bosiako , Kirabo Justine, Derrick Tumwesigye , Anna Nakirabira, Mukisa Paul Brian , Natinael Berhane, Tulengerayo Joshua , Muhammad Murtala Yusuf , Rhoda Chikula, Joy Osifo, Ronnie Ssenfuma , Adrine Nyamwiza, Fadumo Said Hassan , Osadebamwen Nibokun Eghaghe, Amina Fidow Mohamud , Ruchius Philbert, Njongang Vigny Njeodo , Bruce Tukamushaba , Samuel Munyole, Shamim Nabidda , Christine Muhumuza, Musoke Muhammad , Sebudde Nicholus , Kanyesigye Edith , Amumpaire Olivia , Africa’s Youth Researcher Pipeline and Structural Inequities in Clinical Trial Leadership: Implications for Uganda and the African Continent. , Synthēsis: Vol. 8 No. 1 (2026): Volume 8
PETER EBOT EYONG, Jacob Muruhukye, Rita Ewah Mbah, Endurance Lum Ambe, Vahid Esangaya Ntoung-Mbi , Spritney Nashua Ninpa , Tata Liza Ting, Rhoda Chikula, Grace Kemigisha , Geofrey Emesu , Ronald Bwambale , Janepher Nabaasa , Ebere Olive Nwanja, Prossy Nabateregga , Gloria Margaret Nanono, The Bio-Digital Divide: Digital trial adoption and the Bio-digital gap in Africa , Synthēsis: Vol. 4 No. 1 (2026): Volume 4
Nicholus Sebudde , Joanitah Namatovu , Edith Kanyesigye, Martha Alice Namiiro , Bitness Lyabagaga , Edith Kanyesigye , Olivia Amumpaire , Rhoda Chikula, Muhammad Musoke , Jireh Kirabo , Samuel Munyole , Osadebamwen Nibokun Eghaghe , Bruce Tukamushaba , Njongang Vigny Njeodo , Amina Fidow Mohamud, Michael Antwi Bosiako , Christine Muhumuza , Fadumo Said Hassan , Adrine Nyamwiza , Ruchius Philbert, Ronnie Ssenfuma , Yusuf Murtala Muhammad , joshua Tulengerayo , Berhane Natinael , Anna Nakirabira , Derrick Tumwesigye , Justine Kirabo , Kumbukani Chikosa , Joy Osifo , Natinael Berhane yeshanew , Joshua Tulengerayo, Vulnerable Population Protection: Structural Inequalities in Clinical Trial Investment , Synthēsis: Vol. 8 No. 1 (2026): Volume 8

1 2 > >>

Sickle Cell Disease Neglect: A Mismatch Between Burden and Research in Africa

How to Cite

Download Citation

Abstract

References

Most read articles by the same author(s)