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FOI Request

Disclosure ID
FOI/03233
Request Date
July 25, 2019
Subject
Homozygous Familial Hypercholesterolaemi
Description

1). Does Blackpool Teaching Hospitals NHS Foundation Trust diagnose patients with Homozygous Familial Hypercholesterolaemia (HoFH)? Y/N

a. If yes, does your trust diagnose adult patients, paediatric patients or both?

b. 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.

c. Which of the following tests/diagnostic procedures do you use at Blackpool Teaching Hospitals 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.

i. Cascade Genetic/DNA Tests

ii. Dutch Lipid Clinic Network (DLCN) criteria

iii. Simon Broome diagnostic criteria

iv. Family History

v.  Cholesterol/LDL Blood Testing

vi. Other (please specify details of name of test in the FOI return)

2). Does Blackpool Teaching Hospitals NHS Foundation Trust treat patients with Homozygous Familial Hypercholesterolaemia (HoFH)? Y/N

a. If no, please specify where patients diagnosed with HoFH are referred to for treatment.  Please specify Trust/Organisation Name and Hospital Name where possible.

b. If yes, does your trust treat adult patients, paediatric patients or both?

i. 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.

c. How many patients in the last calendar year have received treatment for HoFH at Blackpool Teaching Hospitals NHS Foundation Trust? Please provide where available (and applicable) a breakdown by Adult and/or Paediatric Patients.

d. For HoFH patients requiring Apheresis, are you able to carry out this procedure at Blackpool Teaching Hospitals NHS Foundation Trust? Y/N

i. 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.

ii. If yes, how many HoFH patients in the past calendar year have been treated by Apheresis by Blackpool Teaching Hospitals NHS Foundation Trust?  Please where possible (and applicable) provide with break down by Adult and Paediatric Patients

Response

1). Yes

a. Our Trust diagnoses Adult patients

b. None, however, the new Blackpool lipid clinic only started in September 2018.

c.

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  Y  N  Manchester Royal Infirmary
Dutch Lipid Clinic Network (DLCN) criteria  Y  Y  
Simon Broome Diagnostic Criteria  Y  Y  
Family History  Y  Y  
Cholesterol/LDL Blood Testing  Y  Y  
Other (please specify)      

2). Yes

We do not currently have any adult patients at the Blackpool lipid clinic. The Blackpool lipid clinic was only set up in September 2018.  We do aim to treat these patients in conjunction with Manchester Royal Infirmary

a. Manchester Royal Infirmary

b. Adult

i. see above

c. None

d. No

i. We would refer to Manchester for Apharesis

ii. N/A

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