Evidence map›Paper›PMID 41113354›Full record

ArticleFrontiers in genetics2025

A training program to extend the reach of the deciphering developmental disorders in Africa (DDD-Africa) study.

Aaliah Charles, Zané Lombard, Nadia Carstens, Zandisiwe Goliath, Aimé Lumaka, Prince Makay, Nadja Louw, Robyn Kerr, Daniesha Govender, Amanda Krause and 1 more

Abstract read
In one paragraph

Article in Frontiers in genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
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0citing papers in PubMed
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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

11 authors.

Aaliah CharlesDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Zané LombardDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Nadia CarstensDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Zandisiwe GoliathDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Aimé LumakaCenter for Human Genetics, University of Kinshasa, Kinshasa, Democratic Republic of Congo.
Prince MakayCenter for Human Genetics, University of Kinshasa, Kinshasa, Democratic Republic of Congo.
Nadja LouwDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Robyn KerrDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Daniesha GovenderDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Amanda KrauseDivision of Human Genetics, National Health Laboratory Service and School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa.
Koenraad DevriendtCenter for Human Genetics, University of Leuven and University Hospitals Leuven, Leuven, Belgium.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Developmental disorders (DD), including intellectual disability (ID) and birth defects, affect approximately 7% of individuals worldwide, contributing to high mortality and lifelong morbidity. These disorders impose significant financial and psychological burdens on affected families. Genetic causes are identified in over 40% of DD cases, but diagnostic challenges, lack of appropriate management and curative treatments, and limited knowledge of natural history complicate management. Genetic testing, such as exome sequencing, is the standard diagnostic approach in developed countries. However, access to genetics services in low- and middle-income countries remains limited. Key barriers include poor access to specialist services in general, limited infrastructure, insufficient expertise in medical genetics, and outdated medical training curricula. The Deciphering Developmental Disorders in Africa (DDD-Africa) international training program initiative aims to address some of these disparities by establishing a network of trained professionals across African countries. This network will drive genomic research by identifying patients with DD, assessing them appropriately to direct genomic testing, and providing support to affected families. The training program consists of three phases: (1) an online course covering training in current core medical genetics concepts, (2) a 2-week on-site practical training in Johannesburg in identification, clinical assessment, and variant interpretation of DD patients, and (3) a hands-on implementation of the complete diagnostic process with four families recruited at each team's home institute. The program trains healthcare professionals consisting of a clinician and laboratory scientist together, emphasizing the need for collaboration and a comprehensive understanding of integrated genetic clinical assessment and laboratory diagnostics. Ultimately, the initiative seeks to enhance diagnostic capabilities and family support, fostering a strong pan-African network in the field of DD.

Indexed as

Africadeciphering development disorders in Africa (DDD-Africa)developmental disordersexome sequencinggenetic testingintellectual disabilitylow and middle-income countries (LMIC)training program

Identifiers

PMID41113354
PMCPMC12532005

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