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Ongoing Research

To find out more about any of the research activities listed below please contact the Network administrator at admin@ntmnetworkuk.com.

NORTH Study

The North Study, a national retrospective case series on the management of disseminated NOn-tubeRculous mycobacTerial infection in adults living with HIV, is a UK-wide, retrospective, descriptive, case series of disseminated NTM infection in people living with HIV treated in the era of modern antiretroviral therapy (ART).


Despite decreasing incidence due to widespread availability and early use of more efficacious and robust ART, disseminated NTM infection remains an important cause of hospitalisation, morbidity, and mortality in people living with HIV. However, the evidence that informs current practice comes from when ART was not as widely available or robust. Evidence is limited to inform recommendations on treatment duration and practice varies hugely, with patients often treated for many months.


The NORTH study aims to recruit patients living with HIV and disseminated NTM infection over the last 10 years and describe adverse outcomes and frequency of relapse according to different NTM treatment durations. It aims to inform recommendations on treatment duration and reliable surrogate markers to inform individual decisions on treatment. 
We are now open to sites interested in taking part.

 

If you are interested in getting involved, please get in touch with the Chief Investigator, Cristina Fernandez, via email.

The use of bedaquiline in the treatment of NTM disease in the UK

Bedaquiline is a diaryloquinolone antimicrobial drug that inhibits mycobacterial adenosine triphosphate synthase and is used in the treatment of multidrug resistant tuberculosis. There has been growing interesting in the utility of bedaquiline in the treatment of NTM infections, as in vitro studies have demonstrated that it may have efficacy against isolates of Mycobacterium abscessus (MAB) and Mycobacterium avium complex (MAC), as well against NTM strains that are resistant to macrolide antibiotics. However, there are currently no data from clinical trials regarding the efficacy of bedaquiline in the clinical treatment of NTM infection, and there is a lack of robust evidence regarding which patients would most likely benefit from its use.

This study aims to address this important area of unmet need and to increase the existing evidence base by creating a UK-wide case series on the use of bedaquiline to treat both pulmonary and extrapulmonary NTM infections. We aim to collate information regarding the clinical histories and outcomes of patients who have had NTM infection treated with bedaquiline, which in turn will provide a greater understanding of when its use in NTM treatment regimens should be considered. This will be the first such national case series on bedaquiline use for NTM infections in the UK and will help to inform national guidance in the future.

NTM Patient Survey

Patient surveys conducted across European countries have reported considerable unmet need in the management of patients living with NTM infection. However, a survey focussing on and exploring patient experience in the UK has not yet been published. This study aims to gather the views of patients living with either pulmonary or extrapulmonary NTM infection on their experience of diagnosis, treatment and navigating outpatient care services in the UK. Data gathered could help to direct areas of future development in local, regional and national NTM patient care services.

OPTIMAL

The Optimised Personalised Therapy In Mycobacterium Avium Lung Disease study is being developed by Professor Gerry Davies, Professor of Infection Pharmacology at the University of Liverpool, in conjunction with NTM Network UK. It aims to determine the relative activity of combinations of common agents used for the treatment of Mycobacterium Avium complex (MAC), to explore early biomarkers of response to therapy for MAC, and to evaluate pharmacokinetic/pharmacodynamic relationships of key drugs used in the treatment of MAC.

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