Evidence map›Paper›PMID 39075479›Full record

ArticleBMC medical informatics and decision making2024

The Ugandan sickle Pan-African research consortium registry: design, development, and lessons.

Mike Nsubuga, Henry Mutegeki, Daudi Jjingo, Deogratias Munube, Ruth Namazzi, Robert Opoka, Philip Kasirye, Grace Ndeezi, Heather Hume, Ezekiel Mupere and 8 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC medical informatics and decision making, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Review
  2. Article
  3. Review
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

18 authors.

Mike NsubugaFaculty of Health Sciences, University of Bristol, Bristol, BS40 5DU, UK.
Henry MutegekiThe Infectious Diseases Institute, Makerere University, P. O. Box 22418, Kampala, Uganda.
Daudi JjingoThe Infectious Diseases Institute, Makerere University, P. O. Box 22418, Kampala, Uganda.
Deogratias MunubeDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda.
Ruth NamazziDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda.
Robert OpokaDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda.
Philip KasiryeDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda.
Grace NdeeziDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda.
Heather HumeDepartment of Pediatrics, Centre Hospitalier Universitaire Sainte-Justine, University of Montreal, Montreal, Canada.
Ezekiel MupereDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda.
Grace KebirungiThe Infectious Diseases Institute, Makerere University, P. O. Box 22418, Kampala, Uganda.
Isaac BirungiGlobal Health Uganda, Kampala, Uganda.
Jack MorriceDivision of Human Genetics, Department of Pathology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Mario JonasDivision of Human Genetics, Department of Pathology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Victoria NembawareDivision of Human Genetics, Department of Pathology, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Ambroise WonkamDepartment of Genetic Medicine, McKusick-Nathans Institute, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Julie MakaniDepartment of Haematology and Blood Transfusion/Sickle Cell Program, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
Sarah KiguliDepartment of Pediatrics and Child Health, School of Medicine, Makerere University, Kampala, Uganda. skwalube@yahoo.co.uk.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundSub-Saharan Africa bears the highest burden of sickle cell disease (SCD) globally with Nigeria, Democratic Republic of Congo, Tanzania, Uganda being the most affected countries. Uganda reports approximately 20,000 SCD births annually, constituting 6.67% of reported global SCD births. Despite this, there is a paucity of comprehensive data on SCD from the African continent. SCD registries offer a promising avenue for conducting prospective studies, elucidating disease severity patterns, and evaluating the intricate interplay of social, environmental, and genetic factors. This paper describes the establishment of the Sickle Pan Africa Research Consortium (SPARCo) Uganda registry, encompassing its design, development, data collection, and key insights learned, aligning with collaborative efforts in Nigeria, Tanzania, and Ghana SPARCo registries.

methodsThe registry was created using pre-existing case report forms harmonized from the SPARCo data dictionary and ontology to fit Uganda clinical needs. The case report forms were developed with SCD data elements of interest including demographics, consent, baseline, clinical, laboratory and others. That data was then parsed into a customized REDCap database, configured to suit the optimized ontologies and support retrieval aggregations and analyses. Patients were enrolled from one national referral and three regional referral hospitals in Uganda.

resultsA nationwide electronic patient-consented registry for SCD was established from four regional hospitals. A total of 5,655 patients were enrolled from Mulago National Referral Hospital (58%), Jinja Regional Referral (14.4%), Mbale Regional Referral (16.9%), and Lira Regional Referral (10.7%) hospitals between June 2022 and October 2023.

conclusionUganda has been able to develop a SCD registry consistent with data from Tanzania, Nigeria and Ghana. Our findings demonstrate that it's feasible to develop longitudinal SCD registries in sub-Saharan Africa. These registries will be crucial for facilitating a range of studies, including the analysis of SCD clinical phenotypes and patient outcomes, newborn screening, and evaluation of hydroxyurea use, among others. This initiative underscores the potential for developing comprehensive disease registries in resource-limited settings, fostering collaborative, data-driven research efforts aimed at addressing the multifaceted challenges of SCD in Africa.

Indexed as

Anemia, Sickle CellRegistriesAdolescentAdultChildChild, PreschoolFemaleHumansInfantMaleUgandaYoung AdultDisease registrySickle cell diseaseSPARCo

Identifiers

PMID39075479
PMCPMC11285451

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.