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A new paper conducted by the Infectious Disease Data Observatory and the World Health Organization has revealed major gaps in research on noma, a severe and often fatal oral disease affecting children in low-resource settings. The review analysed 366 studies to provide a comprehensive foundation for future research and policy action.

Noma is a severe gangrenous disease of the mouth and oro-facial structures that can cause disfigurement and serious health issues. It is often fatal if left untreated. Noma primarily affects young children who live in areas with limited healthcare, affected by food insecurity. If diagnosed early, the progression of noma can be stopped with antibiotic treatment. Later phases of the disease will require surgery.

Noma was recognised as a neglected tropical disease by the World Health Organization (WHO) in December 2023. This followed sustained efforts from 32 countries, led by Nigeria, civil society organisations and noma survivors. However, there has been little research into the condition, which means there are still significant gaps in understanding the causes, risk factors, the global burden and optimal treatment for noma. This knowledge gap is exacerbated due to underreporting, as many affected individuals do not get access to healthcare in time. 

Historically, the disease has been thought to be mainly endemic in Sub-Saharan Africa between Mauritania and Ethiopia (the ‘noma belt’), but recent reports continue to identify noma cases in other parts of the world.

In this comprehensive review, Infectious Disease Data Observatory (IDDO) researchers in collaboration with WHO conducted a review of all primary research publications on noma, unrestricted by study design. The systematic review retrieved 366 publications – published between 1839 and 2022 – which included a total of 15,082 patients.

The study concluded that substantial research gaps remain regarding the aetiology, pathogenesis, disease burden and treatment of noma, highlighting the need for standardised reporting, increased surveillance and improved early detection.

The study’s first author, Brittany Maguire, said: ‘Although we identified numerous studies, there remains a lack of evidence-based treatment and management protocols and inconclusive evidence regarding the disease’s underlying causes.’ 

This review encompassed a broad evidence landscape, including case series and case reports that were excluded in previous reviews and so provided a comprehensive baseline of all reported risk factors, microbiological findings and treatment modalities. 

Dr Benoit Varenne, Dental Officer in the Department of Noncommunicable Diseases, Rehabilitation and Disability at WHO, said: ‘By assembling data across a diverse range of study designs, this work not only underscores the need for a consistent framework for disease stage classification, but also offers recommendations to guide the methodology and reporting of future noma research. This research provides a foundation from which future studies can innovate, address existing gaps and contribute to the development of more effective prevention and treatment strategies.’

Dr Yuka Makino, Technical Officer for Oral Health at the WHO Regional Office for Africa, said: ‘The paper makes a series of recommendations aimed at improving research into noma. In addition to findings, those recommendations are extremely valuable for developing a noma module of the WHO road map for neglected tropical diseases 2021–2030, as well as prioritisation of noma research agenda as part of the WHO R&D Blueprint for Neglected Tropical Diseases.’

Read the full paper on the BMJ Global Health website: https://gh.bmj.com/content/10/7/e018023

The full news story is available on the IDDO website: https://www.iddo.org/news/global-action-needed-tackle-noma-disease