Parents or primary caregivers needed for a new research study of genetic testing for children
- Do you have children?
- Are you new to genetic testing?
- Would you like to contribute to a new research study by sharing your views on genetic testing for children?
We are looking for 6-8 parents/primary caregivers who would be willing to participate in a focus group for a new study. (Parents must not have experience with genetic testing for their children.) A focus group is an informal group discussion about a topic of interest, lasting about an hour and a half.
Rare diseases can be complex and cause long-term disabilities. Over 80% of rare diseases have a genetic cause. There are about 8,000 different rare diseases, each affecting fewer than 5 in 10,000 people. Before receiving a diagnosis, children and families often go through a long journey that includes many hospital appointments and tests, often without being given a diagnosis. A new genetic test, called “genome sequencing” (https://www.genomicsengland.co.uk/understanding-genomics/genome-sequencing/), might be able to diagnose diseases and give treatment guidance for childhood rare diseases. However, the use of the new genetic test is currently limited, and there are lots of questions that need to be answered, such as whether the health service afford the new test and how parents/primary caregivers feel about the test.
This study aims to collect information for health care decision-makers to help them understand if parents think genome sequencing is worthwhile. In the study we would like to collect information on the views of parents/primary caregivers of children (whether or not they have a child with a rare disease; but have not had experience with genetic testing) to feed into the study.
We would like parents and primary caregivers to help us with this study by:
- Participating in a focus group to help us study genetic testing for children with rare diseases;
- Helping us to understand how parents would make decisions on whether to have genetic testing on behalf of their children;
- Expressing their preferences for different aspects of genetic testing for children with rare diseases;
- Sharing any concerns they might have about genetic testing.
You will also have the chance to share any other thoughts or views that you have on this topic.
Focus group participants will meet once at the Old Road Campus, Headington, University of Oxford, Oxford.
We will be able to reimburse all travel to attend the focus group meeting. Food will be provided at the event. We will also provide a gift card of your choice worth £50.
Please get in touch as soon as possible if you are interested. The focus group will take place on the 26th February, 2020, so please let us know by 21st February 2020.
This research study is hosted by the Nuffield Department of Population Health at the University of Oxford.
Clinical Trial Registration Details
Ethical approval for this study has been granted by the University of Oxford Central University Research Ethics Committee (Ref: R56197/RE001). The study results will not impact on the care of children. The funder of this research is Genome British Columbia (https://www.genomebc.ca/).
All results will be kept confidential and stored securely. Participation is not compulsory; participants may opt out of the study at any point.