Royal College of Physicians Royal College of Paediatric and Child Health Paediatric FH register British Heart Foundation  Heart UK
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Methods

If the patient consents, the patient's doctor or nurse will enter demographic, clinical and lifestyle information into this web-based database. There is a reminder to update this information annually. Clinicians have access to information about their own patients but cannot see information about other patients.

The information is stored on a secure area of the Royal College of Physicians server with patient identifiable information encrypted and stored separately to clinical information. Only staff who have signed a confidentiality agreement will have access to the patient identifiable information.

Eligible participants

Children who were diagnosed with FH under of the age of 18 years are eligible. Written Patient/Guardian consent will be obtained for children under 18. At age 18, the patient's consent will be requested. Children will be recruited from clinics throughout the UK.

The Project Team

The project is led by Prof Steve Humphries. The project is sponsored by the Royal College of Physicians, which hosts the database and this website on their server. It will be subject to their data protection and information governance policies. The Royal College of Paediatrics and Child Health, British Heart Foundation, Heart UK and the British Inherited Metabolic Disease Group are all involved in the project and have representatives on the steering group which will oversee the project.