APS Action International Clinical Database and Repository

• Research type

  Research Tissue Bank

• IRAS ID

  368701

• Research summary

  APS Action International Clinical Database and Repository

• REC name

  South West - Central Bristol Research Ethics Committee

• REC reference

  26/SW/0055

• Date of REC Opinion

  29 Apr 2026

• REC opinion

  Favourable Opinion

• Data collection arrangements

  Subject privacy and confidentiality will be maintained through the storage of study data in our NHS computers. Each subject will be assigned a unique study number/identifier for identification in the biobank. This unique number will not
  be derived from or related to information about the individual. The key linking this unique study number to patient identifiers (i.e., name, medical record number, date of birth, registry number) will be maintained in the NHS computer database to which only the approved biobank personnel will have access. Immediately following data entry into the password protected databases, the paper-based data collection instruments will be stored in a locked file cabinet.
  Samples will be stored at our HTA licenced rooms at Southbank campus (HTA licence 12522).

• Research programme

  Antiphospholipid Syndrome (APS) is an autoimmune disorder in which autoantibodies, namely antiphospholipid antibodies (aPL), may lead to blood clotting and pregnancy losses. While APS has been well recognized for several years, there still remains a lot of ambiguity about: a) how aPL result in clinical problems; b) the clinical significance of current diagnostic aPL tests; and c) the optimal management of aPL positive patients, with or without history of blood clots. The ultimate goal of APS ACTION is to prevent, treat, and cure antiphospholipid antibody associated clinical manifestations through high quality, multicenter, and multidisciplinary clinical research. The establishment of this international Clinical Database and Repository functions as: (1) a clinical registry for better defining aPL related clinical problems and treatment responses; (2) a repository for standardising aPL tests; and (3) a resource for future basic science and clinical research projects. In addition, APS ACTION Clinical Database and Repository will help us achieve the following goals: 1) further elucidate the mechanisms of aPL related clinical events; 2) incorporate clinically significant risk stratification criteria into clinical studies (such as pregnancy and thrombosis risk) in order to generate evidence based recommendations for prevention and management of these clinical events; 3) confirm the work of other investigators by running studies based on standardized laboratory testing and patients with more homogenous aPL profiles; and 4) will provide opportunity for APS patients to get involved in clinical trials.

• Storage license

  12522

• RTBTitle

  APS Action International Clinical Database and Repository

• Establishment organisation

  King's College London

• Establishment organisation address

  Academic Department of Vascular Surgery

  1st Floor North Wing, St Thomas' Hospital

  SE1 7EH