Transforming Parkinson's Care in Africa (TraPCAf): protocol for a multimethodology National Institute for Health and Care Research Global Health Research Group project

Abstract

Background Parkinson’s disease (PD) is the second most common neurodegenerative disorder and, according to the Global Burden of Disease estimates in 2015, was the fastest growing neurological disorder globally with respect to associated prevalence, disability, and deaths. Information regarding the awareness, diagnosis, phenotypic characteristics, epidemiology, prevalence, risk factors, treatment, economic impact and lived experiences of people with PD from the African perspective is relatively sparse in contrast to the developed world, and much remains to be learned from, and about, the continent. Methods Transforming Parkinson’s Care in Africa (TraPCAf) is a multi-faceted, mixed-methods, multi-national research grant. The study design includes multiple sub-studies, combining observational (qualitative and quantitative) approaches for the epidemiological, clinical, risk factor and lived experience components, as appropriate, and interventional methods (clinical trial component). The aim of TraPCAf is to describe and gain a better understanding of the current situation of PD in Africa. The countries included in this National Institute for Health and Care Research (NIHR) Global Health Research Group (Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa and Tanzania) represent diverse African geographies and genetic profiles, with differing resources, healthcare systems, health and social protection schemes, and policies. The research team is composed of experts in the field with vast experience in PD, jointly led by a UK-based and Africa-based investigator. Discussion Despite the increasing prevalence of PD globally, robust data on the disease from Africa are lacking. Existing data point towards the poor awareness of PD and other neurological disorders on the continent and subsequent challenges with stigma, and limited access to affordable services and medication. This multi-site study will be the first of its kind in Africa. The data collected across the proposed sub-studies will provide novel and conclusive insights into the situation of PD. The selected country sites will allow for useful comparisons and make results relevant to other low- and middle-income countries. This grant is timely, as global recognition of PD and the public health challenge it poses builds. The work will contribute to broader initiatives, including the World Health Organization’s Intersectoral global action plan on epilepsy and other neurological disorders. Trial registration https://doi.org/10.1186/ISRCTN77014546.

Towards a Global View of Parkinson's Disease Genetics

“…24,25 The exact source of this heterogeneity is not perfectly understood, but can likely be attributed to a variety of factors including the breadth and depth of epidemiological data, diagnostic criteria and health record management, access to specialized care, cultural beliefs, distinct environmental exposures, and unique genetic architecture of disease across populations, among others. [26][27][28] PD heritability-defined as the proportion of disease attributable to genetic factors-is currently estimated at 16 to 36% in European populations, 11,14 and 38% in Latino populations. 2 A large portion of PD etiology has yet to be explained.…”

Delivery of Allied Health Therapies to People with Parkinson’s Disease in Africa

“…The partnership between global health agencies, NGOs, and local governments is pivotal. International collaborations, such as the project "Transforming Parkinson's Care in Africa" (TraPCAf; ISRCTN77014546) are work-ing towards improving the state of PD care in the African continent [56]. Initiatives sponsored by international organizations, such as the World Health Organization, aim to boost local capacities.…”