NIHR St George’s ICC-SD Biobank

• Research type

  Research Tissue Bank

• IRAS ID

  296783

• Research summary

  NIHR St George's Inherited Cardiac Conditions & Sudden Death Biobank (ICC-SGB)

• REC name

  Wales REC 3

• REC reference

  24/WA/0008

• Date of REC Opinion

  5 Feb 2024

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Biological samples will be wide ranging:
  - Blood or cheek swab or saliva collected for the sole purpose of research;
  - Any type of tissue obtained as part of routine clinical evaluation including any remaining tissue from clinical biopsy specimens;
  - Subsequently extracted DNA and/or RNA from the above samples.

  Formats: blood fresh stored at -80 degrees Celsius. Tissue stored at -80 degrees Celsius. RNA stored at -80 degrees Celsius. DNA stored at -20 degrees Celsius. All at St George’s University of London under key card access.

  Data:
  All data from NHS clinical records or registries occurring as part of routine NHS clinical assessment eg. demographics, history, ECG, imaging. These data will be pseudonymised and accessible only via the Biobank identifier number held on a 256-bit encrypted (NHS Digital Standard) two-factor authentication (requiring authenticator app) locked password protected network drive held on St George's University of London IT servers.

  Consent for the above, and collection, will be during NHS clinical outpatient appointments or from the next of kin where cases of the deceased are referred for expert cardiac autopsy to CRY Centre for Cardiac Pathology.

• Research programme

  The objective of the ICC-SGB is to establish a database of patients and deceased individuals for registry participation and the donation of data (biochemical, haematological, genetic, electrocardiographic, echocardiographic, radiological) and/or tissue (blood, whole heart tissue blocks/slides, spleen, skeletal muscle) for the purpose of developing a bio-repository of donated data/samples which will be used for clinical health and disease-related research in the field of inherited cardiac conditions (ICC) and sudden death (SD). Research opportunities are envisaged but not limited to translate to improving any aspect(s) of health care in the field of ICC.

• Storage license

  12335

• RTBTitle

  NIHR St George's Inherited Cardiac Conditions & Sudden Death Biobank (ICC-SGB)

• Establishment organisation

  St Georges, University of London

• Establishment organisation address

  Cranmer Terrace

  London

  SW17 0RE