Tay Sachs information for patients

 

Who can be tested for Tay Sachs?

Ashkenazi Jews have the highest risk of carrying Tay Sachs disease. Non-Ashkenazi Jews carry a low risk. We are happy to test anyone of Jewish descent.

If you are a non-Jewish partner of a Jewish person, or if you are from any ethnic group with a family history of Tay Sachs (or the related condition known as Sandhoff disease), we can also test you if you wish.

Tay Sachs walk-in clinics are closing from 1 March 2018

If you require carrier testing for Tay Sachs and/or the other genetic conditions which are more common in the Ashkenazi Jewish population you can access this through the service set up by Jnetics charity and Northwick Park Hospital.

Alternatively, if you are a known carrier of any genetic condition (including conditions that are more prevalent in the Jewish population) then you can be referred to your local Clinical Genetics centre by your GP. If you (or your partner) are currently pregnant, this should be referred as an urgent appointment to your local genetics centre by your midwife or GP.

A list of all the UK clinical genetics centre can be found here.

Ask your GP

As an alternative to going to a clinic, your GP can take the necessary blood samples and send these to us for testing.

Patient history

Blood samples needed

Patients who are not pregnant and have no familiy history of Tay Sachs, including no carriers in the family

  • 10ml lithium heparin
  • 3ml clotted blood  

Patients who are not pregnant but do have a family history of Tay Sachs, including carriers in the family

  • 10 ml lithium heparin
  • 3ml clotted blood
  • 5ml EDTA  

Pregnant women

  • 10ml lithium heparin
  • 5ml EDTA  

Partners of a pregnant woman

  • 10 ml lithium heparin
  • 3ml clotted blood
  • 5ml EDTA  

If you are entitled to NHS treatment and live outside London, your GP can refer you to a clinic closer to your home.

If you are not entitled to NHS treatment, a private doctor could take your blood and send it to the doctor’s laboratory.