The conNeCT study

  • Research type

    Research Study

  • Full title

    The conNeCT study: Neurological Complications of Thrombotic thrombocytopenic purpura

  • IRAS ID

    265706

  • Contact name

    Tina Dutt

  • Contact email

    Tina.Dutt@rlbuht.nhs.uk

  • Sponsor organisation

    The Royal Liverpool University Hospital

  • Duration of Study in the UK

    2 years, 0 months, 0 days

  • Research summary

    Thrombotic thrombocytopenic purpura (TTP) is a rare condition, which has a very high risk of death if not recognised and given immediate treatment. TTP is caused by a very low level of an enzyme in the body, called ADAMTS13. A lack of ADAMTS13 causes multiple small clots to form around the body which can disrupt the blood flow to important organs. Although survival has improved significantly, it is now being recognised that patients with TTP may suffer with longer term complications as a result of their condition; literature from the USA reports higher rates of major depression and also poor memory and reduced concentration in patients with TTP. We aim to improve the understanding of the long-term complications and review, for the first time, forward-looking data at multiple time points in patients with TTP in the UK. Both patients with a new diagnosis and patients with a known diagnosis of TTP identified in NHS hospitals will be included, over a minimum duration of 2 years. This will be a questionnaire based study with both doctor led and patient led questionnaires at pre-determined points in time. By improving our understanding and comparing symptoms to that of the general population, we hope to improve the support and tailor the treatments which can be offered to patients with TTP.

  • REC name

    North West - Greater Manchester South Research Ethics Committee

  • REC reference

    20/NW/0005

  • Date of REC Opinion

    10 Mar 2020

  • REC opinion

    Further Information Favourable Opinion