The International Parkinson Disease Genomics Consortium Africa

Most research leading to novel diagnostics or treatment for patients with Parkinson’s disease has been done almost exclusively in White people. Genetic data from ethnically diverse African populations—shown to contain at least 10% more DNA than current human reference genomes and approximately 3 million new variants—can extend the application of these discoveries for all people.^1,2 The International Parkinson Disease Genomics Consortium (IPDGC)³ includes an African section: the IPDGC Africa, whose mission is to improve the scientific understanding of Parkinson’s disease and other neurodegenerative disorders in African people through clinical and genetic research, education and training, and community engagement. The Consortium is a collaboration between academic institutions in 12 African countries—ie, Nigeria, Ghana, Mali, Senegal, Egypt, Sudan, Ethiopia, Zambia, Tunisia, Tanzania, Cameroon, and South Africa—and the Institute of Neurology, University College London, London, UK, and the National Institutes of Health, Bethesda, MD, USA. We have also formed a partnership with the Global Parkinson’s Genetic Program.⁴

Our Consortium aims to build a collaborative intracontinental network that will establish an African-based registry of 4000 patients with Parkinson’s disease and 4000 healthy controls, and create a framework for future collaborative studies. The emphasis will be on the identification of genetic risk factors of Parkinson’s disease and to explore the relationship between these factors and disease phenotypes (eg, disease subtypes, age at onset, and motor and non-motor symptoms). Ultimately, our aim is to investigate new diagnostic and therapeutic interventions.

The Consortium will enable capacity development in its African sites through education and training. Additionally, our research network is actively engaging with local communities and patients’ organisations to improve awareness of Parkinson’s disease in the region. Our work is being done with input from two international patient advocacy organisations: Parkinson’s Africa and PD Avengers. Our priority is to eliminate stigma and develop culturally sensitive educational materials in common African languages for patients and their care givers.

Our Consortium now has almost 100 affiliated neurologists and neuroscientists, and we have recruited more than a third of the target number of patients and controls so far. We believe that IPDGC Africa will enhance research productivity and improve patients’ lives. Fundamentally, our ethos is one of sharing and collaboration, and we shall strive to ensure equal opportunities and access to resources for African researchers, alongside patient and public involvement.