Science Policy

Noma Research Policy Statement

Published on: April 3, 2026

Noma Research Policy Statement

A. Butali, M. Coker, N. Damé-Teixeira, P. Mossey, W. Thompson, M. Wandera, M. Charles-Ayinde, and C. Fox.

 

Noma (cancrum oris) is a devastating, gangrenous disease of the mouth and face that predominantly affects children aged 2–6 years living in extreme poverty, particularly in sub-Saharan Africa1. It usually begins as a gum lesion that rapidly progresses to necrotizing gingivitis, destroying soft and hard tissues including facial skin. Noma reportedly responds to antibiotic therapy, however, it has a high fatality rate if not treated within the first few days of detection2. Survivors endure severe disfigurement, functional impairments, and social stigma2. Epidemiologic data about the global incidence, mortality and geographic distribution of noma is scarce due to rapid disease progression, social stigma and weak health systems often resulting in undocumented deaths. The lack of robust epidemiological data suggests that the true burden of noma is underestimated. The most widely cited figures from the World Health Organization (WHO) in 1998 estimate 140,000 new cases annually, with a prevalence of 770,000 and a case fatality rate of 90%2. While the true etiology of noma is unknown, the disease shares common risk factors with some other diseases, including malnutrition, poor water, sanitation and hygiene (WASH) conditions, and coinfections such as measles and malaria 3,4,5.

In 2023, noma was added to the WHO list of neglected tropical diseases (NTDs)6.  However, despite this status, evidence relating to the burden of noma and its underlying cause remains inconclusive, awareness among healthcare workers and caregivers is low, and a lack of evidence-based treatment and management protocols exists7. International calls have been made for collective action across sectors and disciplines to tackle noma.

The IADR supports the WHO4 and FDI World Dental Federation8 important contributions towards oral health and dental care team tackling noma. The WHO program includes setting up a new knowledge-sharing platform about noma and developing guidance for noma treatment, incorporating a list of essential therapeutic agents and rehabilitation best practices4.

This IADR policy statement recognizes the urgent need for robust, policy-driven research to address the vast knowledge gaps in the pathophysiology of noma and the limited evidence currently available to guide therapeutic and preventative policies. For the dental, oral, and craniofacial profession to contribute fully to tackling noma, the IADR encourages its members to collaborate with researchers from other sectors to deliver interdisciplinary research. The following research priorities have been identified through consensus of people with lived experience of noma, experts in neglected tropical diseases, clinicians, public health advocates and healthcare researchers9. IADR has adopted these priorities to help align and focus efforts with the international noma research community:

  1. Clear case definition of noma - to help improve the accuracy and validity of reported data, facilitate early detection and surveillance and ensure the quality of diagnosis and care. Where appropriate this may include stating clearly defined clinical and laboratory criteria for the definitive diagnosis of the condition.
  2. Early case detection and robust surveillance – to capture robust data on noma for timely targeted responses focusing on the most at risk, requires systems adapted to remote and resource-constrained settings plus protection of highly sensitive data collected about some of the most neglected and vulnerable people.
  3. Psychosocial and economic impact of noma - to address the significant barriers to reintegration of survivors into society, the voices of affected persons and their communities regarding the best interventions to overcome these challenges need to be heard and recorded, including stigmatization, traditional beliefs, lack of schooling, difficulties finding a job, and living with physical and mental trauma.
  4. Decision support for diagnosing the early stages of noma and associated antibiotic regime(s) with treatment duration –  evidence based guidance is required to understand who is at risk of progressing from early to late stages of noma and which antibiotic regimen are most effective, including possible regional differences, whilst mitigating the risk of antimicrobial resistance.
  5. Deep understanding of risk factors and social determinants – to aid in the understanding of the pathogenesis and etiopathogenesis of noma, in-depth studies are needed of genetic factors, microbial and immunologic signatures, prior exposure to infectious diseases, WASH conditions, behavior, parity of mother and demographic factors (e.g., strong clustering in young age groups).
  6. Identification of effective information, education and communication strategies - to prevent noma, sensitization on the early stages of the disease and measures to prevent it (including universal oral hygiene interventions) should focus on pregnant women, mothers and guardians of young children, traditional healers, and health workers in peripheral facilities. Engagement and integration with existing child health and immunization programs should be sought. Training curricula for all healthcare professionals should include noma.
  7. Effectiveness of surgical services - to support noma survivors and their family members during the extended treatment and rehabilitation periods, a network of referral centers and mobile clinics with sufficient capacity and high degree of specialization should be established.
  8. Testing decentralized follow-up for patients - to reduce the length of stay in rehabilitation centers and improve follow-up, mobile digital technology may have a role.
     

At the IADR General Session workshops held in Bogota (2023), New Orleans (2024), and Barcelona (2025), IADR members identified the importance of ensuring evidence-based practices, appropriate interventions and treatments that should be developed and translated into routine, real-world use. The IADR emphasizes, therefore, the importance of implementation science and health services research to the noma agenda, including the development, delivery and implementation of early preventive interventions.

Achieving progress on these priorities will require dedicated and sustained funding. The IADR calls on governments, philanthropic organizations, and research institutions to mobilize resources to support interdisciplinary research, implementation science, and capacity-building efforts. Strengthened investment is essential to generate robust evidence, develop effective interventions, and ensure that noma research receives parity with other neglected tropical diseases.

By adopting this policy statement, the IADR aims to position itself as a leader and a trusted collaborator in addressing noma across the global health community. It is committed to addressing the challenge of this preventable disease that reflects deep health inequities through advancing research, fostering collaboration, and promoting evidence-based interventions to eradicate noma or reduce its incidence to the lowest possible level.

Adopted 2026

References 

  1. Srour ML, Marck K, Baratti-Mayer D. (2017). Noma: Overview of a Neglected Disease and Human Rights Violation. Amer J Trop Med and Hyg. 96(2): 268–274.
  2. World Health Organization. (2023). Noma. Retrieved from: https://www.who.int/news-room/fact-sheets/detail/noma. Accessed on September 4, 2025.
  3. Verma A, Zaheer A, Ahsan A, Anand A, Abu Serhan H, Nazli Khatib M, Syed Zahiruddin Q, Gaidhane AM, Kukreti N, Rustagi S, Satapathy P, Sharma D, Arora M, Kumar Sharma R. (2024). Noma in the WHO's list of neglected tropical diseases: A review of its impact on undeveloped and developing tropical regions. Prev Med Rep. 43:102764.
  4. World Health Organization. (2024). Global strategy and action plan on oral health 2023–2030. Geneva: License: CC BY-NC-SA 3.0 IGO.  
    Uzochukwu I, Moyes D, Proctor G, Ide M. (2023). The key players of dysbiosis in Noma disease; A systematic review of etiological studies. Front Oral Hlth. 4:1095858.
  5. World Health Organization. (2025). Neglected Tropical Diseases. Retrieved from: https://www.who.int/health-topics/neglected-tropical-diseases#tab=tab_1. Accessed on September 4, 2025.
  6. Maguire B, Shrestha R, Dahal P, Ngu R, Nizigama L, Rashan S, Shrestha P, Harriss E, Newton P, Makino Y, Varenne B, Guerin PJ. (2025). A systematic review of the noma evidence landscape: current knowledge and gaps. BMJ Glob Hlth. 31;10(7):e018023.
  7. FDI World Dental Federation. (2023). Noma: Eradicating a Preventable Disease to Save Lives. Int Dent J. 73(1): 7-8. Revision: General Assembly: September 2025, Shanghai, China.
  8. Galli A, Comparet M, Argaw Dagne D, Baratti-Mayer D, Cao TH, Guérin PJ, Guevara M, Hetzel MW, Jeantet C , Kabengele Mpinga E, Muendane V, Okanlawon M, Placella E, Ribes M, Sherlock M, Utzinger J, Steinmann P. (2025). Defining the noma research agenda. PLoS Negl Trop Dis. 19(4):e0012940.