Coded data
Your name is kept apart from your medical information, which is stored under a number. Researchers cannot link the two.
For families
The answers are with us
We believe the clues to stopping CJD are in the families who carry it. Ten minutes of your time can help researchers find them.
Who can join
Relatives of people with genetic CJD
The biobank is open to people with a genetic form of CJD and to members of their families. You do not need to know whether you carry the gene.
Giving a sample will not tell you, or anyone else, whether you are a carrier.
If you want to know, that is a separate decision, made with a genetic counsellor.
What happens
Four simple steps
Get in touch
We call you back, explain the study and answer your questions.
We come to you
We organise collection days near where you live. A team can come to your home for a family of five or more, or for elderly relatives.
Consent
A clinical team from a hospital biobank explains the study again and asks you to sign a consent form.
About ten minutes
A standard blood sample, a urine sample, a cheek swab, saliva and a short questionnaire. We may ask again in later years.
Your privacy and your choice
You stay in control
Your choice of samples
Give all the samples or only some of them.
Withdraw at any time
You can stop taking part whenever you wish, without giving a reason.
Future trials
If treatments reach clinical trials, the biobank may help people who want to take part find them.
Support for families
If CJD is suspected or diagnosed in your family, you do not have to face it alone. We can guide you on diagnosis, care, genetic counselling and your rights, and put you in touch with:
- support networks for family caregivers;
- volunteer emotional and spiritual support for the patient and the main caregiver;
- support groups for spouses and for people in mourning;
- a social worker specialised in end-of-life and bereavement support, including home visits.
Genetic counselling
First-degree relatives of a carrier have a 50% chance of carrying the mutation. A carrier test is a simple blood test, but the result cannot be undone. Counselling, with a genetic counsellor and a psychologist, helps you decide whether knowing is right for you. Couples can also ask about embryo screening (PGT) before pregnancy.