The Leeds Teaching Hospitals NHS Trust


Coronavirus (COVID-19) information for Clinical Genetics patients

If you have any queries please email Many people who have been seen or advised by the Yorkshire Regional Genetics Service may be concerned about whether their/their child’s underlying genetic condition puts them at increased risk of serious complications of COVID-19. The UK government has two different category levels for this; vulnerable and extremely vulnerable. While many genetic conditions may place people in the vulnerable group, only a small number of people will fall into the extremely vulnerable group.

Advice for “extremely vulnerable” people

People who are “extremely vulnerable” are likely to have conditions that cause problems with the immune system or serious respiratory (breathing) problems. 

This includes:

  1. Solid organ transplant recipients
  2. People with specific cancers:
  • People with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
  • People with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • People having immunotherapy or other continuing antibody treatments for cancer
  • People having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • People who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs

3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD

4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell)

5. People on immunosuppression therapies sufficient to significantly increase risk of infection

6. People who are pregnant with significant congenital heart disease

Two additional groups of people who should now be considered as clinically extremely vulnerable to COVID19 have been identified:

1. Adults with Down’s syndrome (GP’s have been asked to identify and add adults with Down’s syndrome)

2. Adults (18yrs +) with Stage 5 Chronic Kidney disease (not on dialysis or with a renal transplant)

The government asked GP surgeries to contact all extremely vulnerable people by letter. To ensure that nobody was missed, hospital doctors have now been asked to check that patients under their care have received the letter, if appropriate. The department in charge of your/your child's treatment/care should be the team to do this.

If you think that you have a condition that makes you “extremely vulnerable” but you have not received a letter, and you are not under the care of hospital doctor, you should first contact your GP surgery for advice. Please also see the advice from the NHS and UK government about how to protect yourself and what help/support you may be able to get: 

NHS advice for people at higher risk

Government advice for "extremely vulnerable" people

Door poster 

BSGM guidance on Shielding for vulnerable patients


Advice for people with genetic conditions or developmental delay who are not included in the extremely vulnerable list

Please see the links below for general information for people with genetic conditions and developmental delay:

General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders

NHS advice for everyone

NHS advice for people at higher risk 

Door poster

BSGM guidance on Shielding for vulnerable patients


Advice from support groups and charities

Advice regarding specific genetic conditions may be available from support groups or charities. Please see below for a list of examples. Please note, YRGS is not responsible for the content of these websites. This list is not an exhaustive list and patients and families can seek advice and support from their usual patient support group. 


For information for those with an Inherited Cardiovascular condition, please visit the link below for further information