Khartoum, 7th July 2017. Its July 2017, and I’m back in Khartoum for a third time. The mission: to write a mycetoma app in 10 days. It was hotter last time, and less wet, the rainy season is just arriving. I brought the wrong shoes, but Khartoum seems to like all this water. Little reservoirs are expanding from every crack in the road and green things are sprouting at the Mycetoma Research Centre (MRC).
Growth: I’ve returned to the MRC to create the materials for an app. A lot has changed since my last visit in April 2016. The profile of this neglected tropical disease has soared following its addition to the WHO’s official list in May 2016. Research, funding and advocacy partnerships are budding around the world. The MRC itself is growing, with a new pharmacy, building underway for an ultrasound and biopsy suite and blossoming lab facilities; a larger staff with increased hardware can now perform all the tests required in-house. The first randomised controlled trial ever done in mycetoma has begun, led jointly with the Drugs for Neglected Diseases Initiative.
So have such fertile, tropical conditions yielded fruits for the care of mycetoma patients worldwide? No, not yet. Progress in Sudan and developments elsewhere are exciting, but they are unlikely to benefit patients in other parts of the world for several years.
So how does an app help?
Awareness of mycetoma remains low. A body of literature and practice has evolved over 50-60 years, but most of this knowledge and experience is trapped within pay-per-view academic journals or inside the minds of just a few expert physicians. Clinical practice and standards of care vary widely across the globe, and it is patients who lose out.
An app is the ideal solution – we’re hoping. It can distil a diffuse, inaccessible corpus of work into a streamlined, dynamic, free resource available at any time.
Aims: It will aim to provide some education on disease epidemiology, pathogenesis and so on. Then the more ground-breaking aspects, developed specially for the app, are the new guidelines on diagnostic tests and treatment recommendations. There are two clinical forms of mycetoma, bacterial (actinomycetoma) and fungal (eumycetoma). These are caused by over 50 different organisms, varying by geographical region. Despite this diversity, it is entirely possible to have a standard approach to diagnosis, identifying the disease process, causative pathogen and extent of disease. Although the evidence for different therapies has its limitations, the underlying principles of treatment, monitoring and cure are the same, and it is worthwhile highlighting those measures which currently have the best evidence-base. After developing the materials in English, we hope to work on Arabic and Spanish translations.
Overall, the app’s aims are to provide education on mycetoma for health-workers, to support clinical decision-making at all levels (e.g. primary, secondary, tertiary care). We hope it can be the vehicle to kick-start some immediate improvements in mycetoma patient care worldwide.