Qualitative study of experience of parents with NF1 Children
Research type
Research Study
Full title
Exploring parental attitudes to infancy research: a qualitative study involving NF1 families
IRAS ID
152090
Contact name
Jonathan Green
Contact email
Sponsor organisation
Professor Nalin Thakker
Duration of Study in the UK
1 years, 10 months, 29 days
Research summary
Neurofibromatosis type 1(NF1)is a common genetic disorder with estimated birth incidence of 1:2699. Our research indicates that almost a third of children with NF1 meet the criteria for autism spectrum disorders(ASD).
Over the last decade, research has focused on identifying early signs of ASD in an effort to provide early intervention and support for families. The British Autism Study of Infant Siblings (BASIS) is an ongoing study of infants at risk of autism in the UK.
Very little is known about autism in NF1. Studying infants with NF1 to identify early signs of autism and other difficulties is one way of understanding more about autism in NF1. But before such a study is planned it will be important to understand the NF1 families opinions, attitudes to research involving infants.
The aim of this proposal is to gather information from the NF1 community about their attitudes to an infancy study exploring the early signs of autism; so we can provide firm ethical foundation for research in this area and understand how best to meet the NF1 group’s needs, expectations and address any concerns.
Participants will be recruited to form focus groups through the NF1 clinic run by Dr Susan Huson (Consultant Clinical Geneticist), Neuro Foundation charity and the NF well being group at Manchester Metropolitan University. Advertisements about the study will be placed on the charity's newsletter and facebook pages.
A total of 6-8 parents will be recruited into each group (2 parent’s focus groups and telephone interviews). Those living further away from Manchester will be interviewed over the phone. Broad themes will be suggested to the group for discussion. Interviews will be audio recorded and transcribed.
The focus group will be invited to form a parent steering group to meet every 6-12 months and provide ongoing input/suggestions into NF1 research.REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
14/EM/1181
Date of REC Opinion
6 Oct 2014
REC opinion
Favourable Opinion