Endemic neuropathy in UK African and Caribbean communities
Research type
Research Study
Full title
Investigating the genetic basis of nutritional optic and sensory neuropathy in African and Caribbean communities in the UK
IRAS ID
275402
Contact name
Alexander M Rossor
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
No Z6364106/2020/07/84, UCL Data Protection Reference
Duration of Study in the UK
5 years, 0 months, 1 days
Research summary
Endemic neuropathy, also referred to as Strachan's disease, is a disease of malnutrition resulting in damage of the nerves to the eyes, ears and limbs. An epidemic of the neuropathy was observed in Cuba in 1992 following the start of the US embargo and the fall of the USSR. This resulted in widespread food shortages in Cuba and an outbreak of the disease.
In the African-Caribbean community of the UK there continues to be reported cases of endemic neuropathy, particularly in vegetarian and Vegan individuals. We have also observed the occurrence of the disease in siblings. The restriction of the disease to a single ethnic group and amongst siblings is strongly suggestive of a genetic predisposition.
In this study the DNA of patients with endemic neuropathy will be analysed to identify the genetic risk factor that causes the disease. Identifying a genetic risk factor will help to elucidate the exact nutritional deficiencies that drive the disease and allow for targeted treatment. Furthermore, in the future, at risk individuals (i.e. vegetarian or vegan African-Caribbean individuals) may be able to undergo predictive genetic testing and modify their diet to prevent development of this devastating disease. Medical research specific to minority communities in the UK has traditionally been neglected and studies such as this serve to reverse this trend.REC name
London - Dulwich Research Ethics Committee
REC reference
21/LO/0060
Date of REC Opinion
8 Mar 2021
REC opinion
Further Information Favourable Opinion