Inherited Cardiovascular Diseases Biobank
Research type
Research Tissue Bank
IRAS ID
184854
Research summary
Centre For Inherited Cardiovascular Diseases Paediatric Research Tissue Bank
REC name
London - Brent Research Ethics Committee
REC reference
16/LO/0495
Date of REC Opinion
18 Apr 2016
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Venous blood and urine samples will be collected routinely. In addition, myocardial tissue, skin samples and skeletal muscle samples will be obtained from individuals who fulfil the inclusion criteria and are due to undergo a diagnostic biopsy, therapeutic surgical myectomy or similar surgical procedure.
Clinical profiling will be undertaken and linked data will be stored with the samples on a pseudo-anonymised basis. This will include clinical history, relevant family information, genetic status, symptom status and results of investigations.
Donors consent and sample collection will be facilitated through outpatient paediatric cardiology clinics at Great Ormond Street Hospital (GOSH).
Research programme
The existence of the biobank will be publicised by a variety of means with the purpose of disseminating data & research progress and publicising the work of the Biobank, as well as communicating general information about the ICVD team. This information will also be presented to patient groups at information days, conferences and charity meetings. Access to tissue samples and data from the ICVD Biobank will be available to all bona fide researchers for health-related research that is in the public interest, without preferential or exclusive access for any person. All prospective researchers will be subject to the same application process and approval criteria.
Storage license
12055
RTBTitle
Centre For Inherited Cardiovascular Diseases Paediatric Research Tissue Bank
Establishment organisation
Great Ormond Street Hospital
Establishment organisation address
Great Ormond Street
London
WC1N 3JH