Reference 2019-474

REF:           2019-474

Subject:       Homozygous Familial Hypercholesterolaemia (HoFH)

    

 

Request:

  1. Does Bolton NHS Foundation Trust diagnose patients with Homozygous Familial Hypercholesterolaemia (HoFH)? Y/N
  2. If yes, does your trust diagnose adult patients, paediatric patients or both?
  3. How many patients in the last calendar year have you diagnosed with this condition? Please provide where available (and applicable) a breakdown by Adult and/or Paediatric Patients.
  4. Which of the following tests/diagnostic procedures do you use at Bolton NHS Foundation Trust in relation to the diagnostics of HoFH?  For these tests, which ones are you able to carry out “in house”?  Of those carried out elsewhere, where are patients referred to have the testing carried out?  For answers please use table below.
  5. Cascade Genetic/DNA Tests
  6. Dutch Lipid Clinic Network (DLCN) criteria

iii.      Simon Broome diagnostic criteria

  1. Family History
  2. Cholesterol/LDL Blood Testing
  3. Other (please specify details of name of test in the FOI return)
Test Name Test used for HoFH diagnosis at this trust Y/N Test carried out by trust In-house for diagnosis of HoFH Y/N Details of referral organisation/location for those tests that cannot be carried out by the trust.
Cascade Genetic/DNA Tests      
Dutch Lipid Clinic Network (DLCN) criteria      
Simon Broome Diagnostic Criteria      
Family History      
Cholesterol/LDL Blood Testing      
Other (please specify)      

 

  1. Does Bolton NHS Foundation Trust treat patients with Homozygous Familial Hypercholesterolaemia (HoFH)? Y/N
  2. If no, please specify where patients diagnosed with HoFH are referred to for treatment.  Please specify Trust/Organisation Name and Hospital Name where possible.
  3. If yes, does your trust treat adult patients, paediatric patients or both?
  4. If your trust doesn’t treat a subgroup (Adult or Paediatric), to which organisation are this sub group referred to for treatment?  Please specify Trust/Organisation Name and Hospital Name where possible.
  5. How many patients in the last calendar year have received treatment for HoFH at Bolton NHS Foundation Trust? Please provide where available (and applicable) a breakdown by Adult and/or Paediatric Patients.
  6. For HoFH patients requiring Apheresis, are you able to carry out this procedure at Bolton NHS Foundation Trust? Y/N
  7. If no, to which organisation(s) do you refer patients to for Apheresis treatment and how many patients are referred to these sites?  Please list by trust name and hospital site where available, and where possible/applicable please breakdown patient referrals by Adult and Paediatric.
  8. If yes, how many HoFH patients in the past calendar year have been treated by Apheresis by Bolton NHS Foundation Trust?  Please where possible (and applicable) provide with break down by Adult and Paediatric Patients.

 

 

Response:

Please find information attached.

2019-474 – FOI request – Homozygous Familial Hypercholesterolaemia (HoFH) [124 kb] PDF