Challenges

The World Health Organization (WHO) estimates that, by 2040, as a result of a growing and aging world population, neurodegenerative diseases will be the world’s second leading cause of death, after cardiovascular diseases. Therefore, from a national health policy perspective, investigating neurodegenerative diseases is highly worthwhile.  However, in many cases, countries of the Global South are not equipped to develop these investigations: they are not able to determine the genetic variations that associate with these conditions nor to develop animal and cellular models mimicking human diseases. Moreover, coordination and intelligence-sharing between health and research centres across countries is often lacking. Achieving the target of reducing premature deaths from non-communicable diseases by 1/3 by the year 2030 includes the need for innovation and new efficient technologies on neurodegeneration. It is key that this is inclusive, i.e. taking into account the genetic background and studies of people from the Global South.

Toward a Solution

Neurodegenerative diseases are a group of related conditions resulting from the progressive degeneration of various regions of the human brain (e.g. the frontal and temporal lobes of the brain). Depending on the brain regions affected, the disease can induce alterations in all aspects of human behavior, such as decision-making, behavioral control, emotion and language. Research in this field has shown that the incidence of neurodegenerative diseases in the general population has seen a steady increase in all conditions, ranging from epilepsy to Alzheimer disease, also known as Frontotemporal Dementia. Generally speaking, from stroke to headache, neurodegenerative diseases affect up to one billion people worldwide (WHO). This is especially true for countries in the Global South, many of which are experiencing rapid increases in life expectancy.

In recent years, research in this area has allowed the mapping of the most important genes involved in the origin of neurodegeneration. However, this has mostly involved the analysis of patients from such regions as Europe, USA, Canada, and Australia who mostly share the same genetic ancestry. In many countries in the Global South, especially those in Africa and South-East Asia,there is virtually no information on the genetic background of people affected by neurodegenerative diseases, nor on the genetic variations that may predispose subjects to develop them.

Therefore, investigating this field would be an invaluable help for the countries of the Global South and would also represent a potentially key contribution to human knowledge, potentially leading to the development of more efficient therapeutic approaches. In parallel, patients and their caregivers are always at risk of not receiving proper support from institutions such as hospitals and research institutes, in terms of facilitation, treatment plans, and support aids. To help fill this gap, ICGEB provides access to networks of global leading experts in key aspects of research for these disorders.

It is important to note that ICGEB researchers are already well embedded in many countries of the Global South, through their hosting and training of students and young researchers from ICGEB Member States in ICGEB Component laboratories. ICGEB researchers also actively participate in meetings that are attended by researchers from the Global South on these types of scientific approaches (e.g.Genomics and Human Health in Africa, 2–7 December 2018)

As a result, ICGEB will aim to take a leading role in empowering the domestic scientific communities in its Member Countries to foster research in targeted emerging areas. Moreover, ICGEB will put in place several strategies to integrate and disseminate current knowledge that will include: 1) fostering the training in leading-edge technical and conceptual advances that arise from the study of early- and late-stage pathological neurodegeneration. 2) organizing workshops and other meetings to bring together researchers from different countries and Regions. 3) promoting the formation of South-South local and trans-national professional and patient societies that will promote research, but will also ensure that there is a rapid legislative development in countries that will soon be facing these new challenges.

Point number 3 is particularly important if we consider the statement by Dr Margaret Chan, WHO Director-General, in the 2007 report Neurological Disorders: Public Health Challenges: “Despite the fact that highly effective, low-cost treatments are available, as many as nine out of 10 people suffering from epilepsy in Africa go untreated. Health systems need to be strengthened to deliver better care for people with neurological disorders” is still largely true.

In conclusion, ICGEB is currently uniquely positioned to provide invaluable guidance to other scientists, decision-makers, and the general population towards lessening the impact of neurodegenerative diseases both at the macro-economic and at the individual human level, therefore ICGEB positions itself as instrumental to help countries progress towards the achievement of SDG 3.4.