1. Does East Lancashire Hospitals NHS Trust diagnose patients with Homozygous Familial Hypercholesterolaemia (HoFH)? Y/N No, as this usually requires genetic testing for confirmation which we don’t do in the trust
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 East Lancashire Hospitals NHS 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)
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
|
N
|
N
|
Lipid clinic Royal Preston Hospital (RPH) or Manchester Royal Infirmary (MRI)
|
Dutch Lipid Clinic Network (DLCN) criteria
|
Y
|
These are criteria and not a particular test
|
|
Simon Broome Diagnostic Criteria
|
Y
|
These are clinical criteria and not a test
|
|
Family History
|
Y
|
These are criteria and not a particular test
|
|
Cholesterol/LDL Blood Testing
|
Y
|
Y
|
|
Other (please specify)
|
|
|
|
2. Does East Lancashire Hospitals NHS Trust treat patients with Homozygous Familial Hypercholesterolaemia (HoFH)? Y/N Y
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? Adult
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. Paediatric patients are refereed to tertiary centres.
c. How many patients in the last calendar year have received treatment for HoFH at East Lancashire Hospitals NHS Trust? Please provide where available (and applicable) a breakdown by Adult and/or Paediatric Patients. There is no specific code for Homozygous Familal Hypercholesterolaemia. We are therefore unable to say how many patients have received treatment for this. We can say how many have received treatment for Pure Hypercholesterolaemia which includes familial hypercholesterolaemia if this is required.
d. For HoFH patients requiring Apheresis, are you able to carry out this procedure at East Lancashire Hospitals NHS Trust? Y/N No
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. MRI
ii. If yes, how many HoFH patients in the past calendar year have been treated by Apheresis by East Lancashire Hospitals NHS Trust? Please where possible (and applicable) provide with break down by Adult and Paediatric Patients.