Genetic Skin Disease in Scotland
Research type
Research Database
IRAS ID
306867
Contact name
Mozheh Zamiri
Contact email
Research summary
Genetic Skin Disease in Scotland
REC name
East of Scotland Research Ethics Service REC 1
REC reference
21/ES/0104
Date of REC Opinion
28 Jan 2022
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Collection of demographic and clinical data on genetic skin disease in Scotland via NHS collaborators at 11 NHS Health Boards with written consent from participants. Data is collected and updated through secure transfer mechanisms via HIC Services agreed with Data Controllers providing researchers and data users with linked, anonymised information and secure data collection tools for specific study collection of consented data. The detailed procedures are described in HIC Services SOP 01 HIC Data Security and HIC Services SOP 05 CIB Security.
Research programme
There are over one thousand uncommon and rare genetic skin diseases. These genetic skin diseases are associated with variations in the human genome at one or multiple locations. However, the genetic basis of these skin diseases and their prevalence in the UK remain poorly understood. The primary objective is to register patients and families with rare genetic skin diseases with the aim of supporting research into underlying mechanisms and the development of new therapies. The British Association of Dermatologists Dermatology and Genetic Medicine (BADGEM) is UK-wide professional network of dermatologists with special interest in this area, supporting the database. Eleven NHS Boards in Scotland with Dermatology Centres where rare genetic skin disease are diagnosed are involved.
Research database title
Genetic Skin Disease in Scotland
Establishment organisation
NHS Greater Glasgow and Clyde
Establishment organisation address
Clinical Research & Development
West Glasgow Ambulatory Care Hospital
G3 8SW