Registry of Autoimmune Rheumatic Diseases

• Research type

  Research Tissue Bank

• IRAS ID

  181599

• Research summary

  Registry of Autoimmune Rheumatic Diseases

• REC name

  East Midlands - Derby Research Ethics Committee

• REC reference

  15/EM/0252

• Date of REC Opinion

  15 Jun 2015

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Patients attending the Rheumatology Department at Guy's and St Thomas' Hospital NHS Foundation Trust will be identified by the attending physician or/and a member of the research team and invited to participate in the registry. The nature of the registry will be explained and potential candidates will be offered to participate on the same day of their routine appointment.

  An information sheet and a consent form will be given to them along with the contact person details for further information. If the patient agrees to take part, informed, written consent for a blood sample donation will be obtained.

  On arrival to the Lupus Research Laboratories, samples will be logged in a log-book and then, transferred to an electronic format where the link to the personal data will be broken as the sample is given a laboratory number. Box number and place within the box corresponding to each sample will be recorded in the log book and in the electronic format. All samples will be stored separately in a -80°C freezer until used at the Lupus Research Laboratories, The Rayne Institute, St Thomas' Hospital.

  Participation is completely voluntary. Candidates can refuse to participate or withdraw from the project at any time without stating a reason. The decision not to take part or to withdraw will in no way affect the medical care they receive.

• Research programme

  The registry of autoimmune rheumatic diseases involves the standardised collection of blood and clinical information from individuals with several diseases such as lupus, rheumatoid arthritis, scleroderma, vasculitis, Sjogren’s syndrome, polymyositis, and dermatomyositis, as well as patients with antiphospholipid syndrome. The great advantage of the registry is that it can provide researchers with complete sets of clinical blood samples to answer important clinical questions, helping to facilitate the integration and analysis of clinical and biological data. In turn, by having a registry of samples/clinical data available, individual participants are exempt from the burden and the stress of being asked to donate samples on more than one occasion. Samples from this registry will be used for research within the Lupus Research Unit and to support our teaching programme.

• Storage license

  12522

• RTBTitle

  Registry of Autoimmune Rheumatic Diseases

• Establishment organisation address

  Room 5.31, James Clerk Maxwell Building

  57 Waterloo Road

  London

  SE1 8WA