Who can take part in this survey?
If you are aged 18 or over, are a patient or carer of someone with a rare or undiagnosed condition, and are based in the UK, we would be grateful if you could take part in this survey. You might have taken part in the 100,000 Genomes Project but this is NOT necessary.
The survey should take no longer than 20 minutes.
What is the project about?
We aim to understand patients’ and carers’ views about whole genome sequencing and its introduction as part of routine NHS care.
Whole genome sequencing (WGS) is a technology which looks at all of the genetic code in a cell in the hope of uncovering new understanding about the causes and best treatments for diseases. WGS promises to help increase understanding of rare inherited diseases and cancer in order to improve care and diagnosis. Earlier this year NHS England and Genomics England announced the launch of a national Genomic Medicine Service. This will see the introduction of WGS as part of routine care for patients with certain rare conditions, undiagnosed conditions, and cancer. This is following on from their previous work, the 100,000 Genomes Project, a research project that aimed to sequence 100,000 whole genomes of patients affected with certain rare and undiagnosed conditions, and also cancers, which is due to close this year.
What is the aim of the survey?
Genomics England has commissioned Genetic Alliance UK to seek the views of patients and carers around the introduction of WGS into the NHS. They would also like to hear about people’s experiences of taking part in the 100,000 Genomes Project. This information will be used by Genomics England to inform the launch of mainstream WGS, as part of the new Genomic Medicine Service.
What will taking part involve?
Taking part will involve completing a short, online survey which will ask about your thoughts on WGS and the NHS. If you have taken part in the 100,000 Genomes Project, it will also ask about this experience.
If you have any questions about this research please contact [email protected]