The Patient Information Sheet explains all the key features about the 100,000 Genomes Project: why it’s running, what it aims to achieve, how patients can take part and what they will have to do.
It’s important that you go through this with the Research Nurse on the project. They will help you with anything you don’t understand about the study.
The Patient Consent Form then asks for your consent to join the project. You can change your mind at any time and leave the project, even if you have signed the consent form. This will not affect your usual NHS care.
You can view our Patient Information Sheets and Consent Forms below. If you have been referred by your hospital doctor to the 100,000 Genomes Project, your research nurse will go through all the relevant documents with you.
Patient Information Sheets
- Patient Information Sheet for parents of a child with a rare disease (Cambridge)
- Patient Information Sheet for a child aged 6 to 10 years (Cambridge)
- Patient Information Sheet for a young person 11 to 15 years (Cambridge)
- Patient Information Sheet for an adult with a rare disease (Cambridge)
- Consent form for a child patient with a rare disease – for parent to sign (Cambridge)
- Consent form for an adult patient with a rare disease or their adult relative (Cambridge)
If you want to know how the project started just click on the link to the 100,000 Project.