Title: NIHR Global Health Research Group on Transforming Parkinson's Care in Africa (TraPCAf)
Funder: Department of Health and Social Care

Abstract: The largest proportionate growth of people aged over 60 is occurring in low & middle income countries (LMICs), such as those in sub-Saharan Africa (SSA). Already coping with a large burden of infectious diseases they now face a large increase in age-related diseases such as dementia and Parkinson’s disease (PD). There are very few medical specialists. Effective symptomatic drug treatment is available, though not a cure, but access is very limited in SSA. People undiagnosed, and others not treated, will have a much poorer quality of life and a markedly reduced life expectancy. We have treated people in SSA who were virtually bed bound and within days were back working on their farm. We showed similarly dramatic short term impacts for a physiotherapy cueing intervention before drug treatment was available locally. There is a lack of awareness about PD among the general public and health professionals, so people often don’t recognise symptoms or access medical help and, even when they do, may not be correctly diagnosed. Some PwP see traditional, or faith, healers and many seek no help at all, mistaking the symptoms for old age and feeling nothing can help. Even those diagnosed face the challenge of obtaining affordable and sustainable drug treatment. _x000D_ _x000D_ This research will enable us to gain invaluable information on the phenotype of PD and response to treatment in Africa. We will test ideas for aiding diagnosis and management, and develop support including patient and carer information. We will strengthen research capability in PD in Africa. We are linking with the Global Parkinson’s Genetics Programme (GP2) investigating the genetics of PD worldwide, including Africa. _x000D_ _x000D_ We plan to work with colleagues in Tanzania, Kenya, Ghana, Nigeria, South Africa, Ethiopia and Egypt to: _x000D_ Improve Diagnosis –_x000D_ 1. Develop aids to diagnosis for non-specialist doctors, such as questionnaires appropriate for LMIC settings, and equipment that measures bradykinesia and tremor. We will utilise innovative techniques such as scripted videos recorded on smartphones and asynchronously analysed by movement disorder specialists in Africa, UK or Europe, and also investigate chemicals in blood, sweat and urine as early signs of PD. We will also collect stool samples for microbiome analyses. _x000D_ 2. Provide training for doctors, nurses and therapists to improve diagnosis and management._x000D_ 3. Develop and trial services for diagnosis and management of PD by non-specialists._x000D_ 4. Undertake community based door to door prevalence studies in Tanzania, Ghana, Nigeria and Kenya, testing different screening measures. _x000D_ _x000D_ Improve care -_x000D_ 5. Develop a database of PD outpatients in sites in the different countries with detailed phenotype, treatment response and outcome. _x000D_ 6. Look at the effectiveness and side-effects of preparations of Mucuna pruriens (MP), a tropical plant, compared to Levodopa (standard drug treatment) in Tanzania. Evidence from an on-going Ghana study suggests MP is affordable and effective with limited side-effects. _x000D_ 7. Assess the response to drug treatment, with non-invasive and low-cost home monitoring with wearable movement sensors in PwP who consent. _x000D_ 8. Work with patient and carer support groups to investigate the lived experiences, clarify priorities and raise public awareness via standard media techniques and social media._x000D_ 9. Collaborate with the Investigators on GP2 to collect blood, saliva and stool samples for genetic analyses.

Lay abstract: The largest proportionate growth of people aged over 60 is occurring in low & middle income countries (LMICs), such as those in sub-Saharan Africa (SSA). Already coping with a large burden of infectious diseases they now face a large increase in age-related diseases such as dementia and Parkinson’s disease (PD). There are very few medical specialists. We estimate half the people with PD (PwP) in the world are not diagnosed. Effective symptomatic drug treatment is available, though not a cure, but access is very limited in SSA. People undiagnosed, and others not treated, will have a much poorer quality of life and a significantly reduced life expectancy. We have treated people in SSA who were virtually bed bound and within days were back working on their farm. We showed similarly dramatic short term impacts for a physiotherapy cueing intervention before drug treatment was available locally. There is a lack of awareness about PD among the general public and health professionals, so people often don’t recognise symptoms or access medical help and, even when they do, may not be correctly diagnosed. Some PwP see traditional, or faith, healers and many seek no help at all, mistaking the symptoms for old age and feeling nothing can help. Even those diagnosed face the challenge of obtaining affordable and sustainable drug treatment. _x000D_ _x000D_ This research will enable us to gain important information on PD and effectiveness of treatment in Africa. We will test ideas for helping diagnosis and management, and develop support including patient and carer information. We will strengthen research capability in PD in Africa. We are linking with a current research study looking at the genetics of PD worldwide, including Africa. _x000D_ _x000D_ We plan to work with colleagues in Tanzania, Kenya, Ghana, Nigeria, South Africa, Ethiopia and Egypt to: _x000D_ Improve Diagnosis –_x000D_ 1. Develop aids to diagnosis for non-specialist doctors, such as questionnaires appropriate for LMIC settings, and equipment that measures slowness of movement and tremor, the two major symptoms of PD. We will utilise new techniques such as scripted videos recorded on smartphones and then analysed by movement disorder specialists in Africa, UK or Europe, and also investigate chemicals in blood, sweat and urine as early signs of PD._x000D_ 2. Provide training for doctors, nurses and therapists to improve diagnosis and management._x000D_ 3. Develop and trial services for diagnosis and management of PD by non-specialists._x000D_ 4. Undertake community based studies of the number of people with PD (prevalence) in Tanzania, Ghana, Nigeria and Kenya, testing different diagnostic methods. _x000D_ _x000D_ Improve care -_x000D_ 5. Develop a database of PD outpatients in sites in the different countries to enable description of their characteristics. _x000D_ 6. Look at the effectiveness and side-effects of preparations of Mucuna pruriens (MP), a tropical plant, compared to Levodopa (standard drug treatment) in Tanzania. Evidence from an on-going Ghana study suggests MP is affordable, effective and side-effects are limited._x000D_ 7. Assess the response to drug treatment, with low-cost home monitoring with wearable movement sensors in PwP who consent. _x000D_ 8. Work with patient and carer support groups to understand lived experience, raise public awareness via standard media techniques and social media._x000D_ 9. Collaborate with the Investigators on a large genetic projects to collect blood, saliva and stool samples for genetic analyses.

Research activity codes: 2.4 SURVEILLANCE AND DISTRIBUTION;4.5 RESOURCES AND INFRASTRUCTURE (DETECTION);6.1 PHARMACEUTICALS;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL