Rare Cardiovascular Diseases Biobank

• Research type

  Research Tissue Bank

• IRAS ID

  328866

• Research summary

  Rare Cardiovascular Diseases Biobank

• REC name

  London - Brent Research Ethics Committee

• REC reference

  23/LO/0607

• Date of REC Opinion

  2 Aug 2023

• REC opinion

  Favourable Opinion

• Data collection arrangements

  Venous blood and urine samples will be collected routinely. Saliva samples, nasal and buccal swabs may also be collected from some patients, where approriate. 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) and Bart's Hospital and through inpatient admissions where relevant.

  Samples will be stored at the Zayed Centre for Rare Disease in Children.

• Research programme

  The existence of the Rare Cardiovascular Disease Biobank will be publicised by a variety of means with the purpose of disseminating data & research progress and publicising the work of the Biobank. This information will also be presented to patient groups at information days, conferences and charity meetings. Access to tissue samples and data from the 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

  12220

• RTBTitle

  Rare Cardiovascular Diseases Biobank

• Establishment organisation

  UCL/GOS Institute of Child Health

• Establishment organisation address

  Zayed Centre for Research into Rare Disease in Children

  20 Guilford Street

  London

  WC1N 1DZ