Familial Hypercholesterolaemia Paediatric Register
Research type
Research Database
IRAS ID
238252
Contact name
Uma Ramaswami
Contact email
Research summary
UK Paediatric Familial Hypercholesterolaemia Register
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
19/NE/0045
Date of REC Opinion
23 Apr 2019
REC opinion
Favourable Opinion
Data collection arrangements
The above register was first granted ethical approval on 30th January 2013; (12/NE/0398). The current application is to grant a further five year extension of ethical approval for the UK paediatric FH register. The process of data collection and analyses has not changed since the previous ethical approval in 2013. Patients will be approached at their routine clinic appointment by their doctor or specialist nurse. Information about the Register will be provided and consent and
assent obtained. The Register collects only information that is part of the regular assessment and treatment of the patient. This includes 1. Information about the patient including age, ethnicity and sex, 2. Details of how the diagnosis was made. 3. Measurements made, including cholesterol levels 4. Treatments . This information will be updated at the time of each appointment which is usually annually.
Information will be input by the doctor or nurse into a database on a secure server located at Net Solving, previously hosted by RCP.Research programme
The Register was set up to collect information on children with an inherited disease called Familial Hypercholesterolaemia (FH). The community supported by this work is primarily UK children with FH and their parents. But the work will also help adults with the condition and will be relevant to people with FH worldwide. It can also serve as a model for condition specific registers.
Research database title
UK Paediatric Familial Hypercholesterolaemia Register
Establishment organisation
HEART UK- The Cholesterol Charity
Establishment organisation address
7 North Road
Maidenhead
Berkshire
SL6 1PE