Participant Experiences of the 100,000 Genomes Project
18 July 2019
Participant Experiences of the 100,000 Genomes Project
As a member of Genetic Alliance, Nerve Tumours UK welcomes their latest research and survey results
Genomics England commissioned Genetic Alliance UK to seek the views of patients and carers around the introduction of Whole Genome Sequencing into the NHS. They also wanted to hear about people’s experiences of taking part in the 100,000 Genomes Project ( A project that sequenced 100,000 genomes from around 85,000 people. Participants were NHS patients with a rare disease, plus their families, and patients with cancer).
Here are some of the key findings:
1. The majority of our respondents were glad they had taken part in the 100,000 Genomes Project:
(73%), would take part again (86%), and would be likely to participate in future medical and genomic research.
2. However, fewer than half (43%) of our respondents said they were ‘satisfied’ or ‘very satisfied’ with their overall experience of taking part in the 100,000 Genomes Project. Respondents indicated that the benefits they hoped for from taking part were not matched by actual benefits achieved at the time of the survey.
3. Most respondents (77%) had yet to receive a result at the time of our survey, which offers a likely explanation for the discrepancy between findings 1 and 2.
4. Over 80% of patients and carers felt they had been provided with sufficient, comprehensible information about the 100,000 Genomes Project before taking part. However they would have liked more information about what to expect during the process, and more regular contact while waiting for a result.
If you would like to find out about the full results of the study you can do so by clicking on the link below:
Filter News
_800_600_s_c1.jpg)
Rare Disease Day 2025
All the highlights, updates and impact from NTUK's involvement in Rare Disease Day 2025
Read More
William & Andrew’s NF1 Story
Andrew's using his own obstacles in life to inspire his son William on his NF1 journey.
Read More
First Diagnosis Survey
A survey to improve NF diagnosis support by gathering feedback on early experiences and concerns from those affected.
Read More_800_600_s_c1.jpg)
Working with the hospitality industry & creating safe spaces for everyone
Read More
Visible Differences: Changing The Narrative
Nerve Tumours UK joins multi-organisational workshop to enhance support for those with a visible difference
Read More
Repurposing anti-retroviral drugs to treat NF2 related tumours Retreat Study
Join a brand new study treating tumours in NF2 patients.
Read More_800_600_s_c1.png)
Nerve Tumours UK joins the Neurological Alliance of Scotland
Nerve Tumours UK joins the Neurological Alliance of Scotland.
Read More_800_600_s_c1.png)
Brain scans to give crucial insight into childhood genetic disease
New funding secured for exciting new global research initiative.
Read More