What is the National Down Syndrome Cytogenetic Register (NDSCR)?
The NDSCR has collected pregnancy and birth information in England and Wales on Down syndrome since 1989 and on Patau and Edwards syndromes since 2004 in order to:
- Determine the number of pregnancies and births with Down, Patau and Edwards syndromes.
- Enable planning for the health, education and special needs to children born with Down syndrome.
- Know how well antenatal screening tests identify pregnancies with Down, Patau and Edwards syndromes.
- Know how many women decided not to have screening for Down syndrome.
- Carry out research on Down, Patau and Edwards syndromes.
How do we identify affected pregnancies and births?
- All cytogeneticists who analyse chromosomes using tissue from an amniocentesis, a chorionic villus sampling or a blood sample notify us when they diagnose Down, Patau or Edwards syndromes in a fetus or baby.
- Doctors caring for the mothers are asked for information.
What do we ask?
- Maternal age, postcode and details about current and previous pregnancies.
- Whether antenatal screening for Down syndrome was offered and accepted and what type of screening was performed.
- The karyotype of the fetus and if known the karyotype of the parents.
Full names and addresses are NOT collected.
Who sees the information?
- Details are only available to the NDSCR staff.
- Information that is used or published by researchers is anonymous – it does not contain any information which could identify the mothers or babies.
- Information is exchanged with other registers which conform to the same rigorous policies on data security.
Is the information we hold secure?
Yes, it is secure because:
- It is entered onto a computer accessible only by the staff working on the NDSCR and all paper records are kept in locked filing cabinets.
- The NDSCR has a strict policy on security and confidentiality which all staff must follow.
- The NDSCR conforms to the requirements of data protection law:
- NIGB ref: 2-08(e)/2002
- Trent REC ref: 09/H0405/48
Can women request not to be included in the NDSCR?
- Yes, details can be removed at any time, by contacting the NDSCR (contact details can be found on the About Us page).
- The NDSCR will never contact a mother or baby on the register.
How can I find out more about the NDSCR?
- The NDSCR publishes an annual report (available on the Reports page).
- If you have any questions or concerns or would like a copy of the annual report please contact Professor Joan Morris (contact details can be found on the About Us page).
Please click here for an information leaflet (150kB PDF) which includes the information above and some research that has been carried out using the NDSCR data; this can be printed out and distributed to health care professionals as well as parents.