CHANGE Study
Research type
Research Study
Full title
The acceptability to CHildren and young people with Asthma of usiNg GEnetic information to guide treatment
IRAS ID
258873
Contact name
Daniel Hawcutt
Contact email
Sponsor organisation
Alder Hey Children's Hospital
Duration of Study in the UK
0 years, 4 months, 30 days
Research summary
CHANGE is a study looking at the acceptability of genetic testing in childhood asthma management to aid in personalisation of treatment. It will also assess who should have access to the data, how data should be collected and the relative importance of data from the views of children and young people, parents/guardians and healthcare professionals.
Children and young people are not currently included in many aspects of personalised medicine. It is not yet clear what children and young people or their parent/guardian will think about the use of using personal data such as genomic information to guide treatment choices. For a novel diagnostic test to be developed and marketed, it is necessary to ensure that it would be acceptable to both healthy children (and parent/guardian), as well as those already diagnosed with asthma.
This work would examine the theory (including use of genetic data, data sharing between primary and secondary care, etc) and practical issues (preferred method [blood v saliva], where should the test be done - at GP or in secondary care, how to find out results, etc).
The CHANGE study aims to undertake a prospective questionnaire-based study of children and young people, parents and healthcare professionals who may be attending outpatient clinic for asthma, are members of the Liverpool YPAG, or who work with patients with asthma at Alder Hey Children's Hospital.
Based on the input from the different perspectives, MCD (an external company) would develop a test to identify all relevant polymorphisms. It is envisaged that within the timeline of the project an initial prototype identifying key polymorphisms may be available to trial and that result reporting could be adapted to make the reporting both useful to the clinician and understandable to the patient/parent/guardian.
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
19/NW/0327
Date of REC Opinion
11 Aug 2019
REC opinion
Further Information Favourable Opinion