TTP and aHUS in complicated pregnancies

  • Research type

    Research Study

  • Full title

    An observational study to determine the prevalence of pregnancy-related thrombotic thrombocytopenic purpura and atypical haemolytic uraemic syndrome in women affected by specific obstetric complications

  • IRAS ID

    248966

  • Contact name

    Marie Scully

  • Contact email

    m.scully@nhs.net

  • Sponsor organisation

    Joint Research Office, UCL

  • Clinicaltrials.gov Identifier

    Z6364106/2018/06/142, UCL Data Protection Registration; Pending (entry awaiting PRS review), Clinicaltrials.gov ID

  • Duration of Study in the UK

    1 years, 6 months, 1 days

  • Research summary

    Thrombotic thrombocytopenia purpura (TTP) and atypical haemolytic syndrome (aHUS) are both rare diseases. They share common features of widespread clumping of platelets (a type of blood cell) in small blood vessels leading to (i) low platelet levels ('thrombocytopenia')(ii) damage to organs supplied by the blood vessels due to lack of blood/oxygen and (iii) anaemia due to red cell damage and destruction as they flow past the platelet clumps ('microangiopathic haemolytic anaemia').

    If untreated, TTP commonly leads to damage of the heart, brain and kidneys, whilst aHUS commonly damages the kidneys, and both conditions can be lethal. Effective treatments exist however. If these are started in a timely fashion, most patients make a full recovery. It is therefore vital that the correct diagnosis is made early, which is not always easy as they are so rare.

    Pregnancy is a well recognised trigger for both diseases, and there can be serious consequences for the baby, including impaired growth and even stillbirth. Current estimates suggest that around 1 in 25000 pregnancies are affected. However, we wonder whether some cases in pregnancy are being missed, or misdiagnosed as more common conditions such as pre eclampsia, which can cause similar symptoms.

    Over 18 months at UCLH we hope to recruit 100 women, who are pregnant or recently gave birth, and whose pregnancy was affected by 1+ of six different pregnancy complications. These include (i) severe preeclampsia (ii) HELLP syndrome (a very severe form of preeclampsia) (iii) stillbirth (iv) reduced growth of the baby (v) unexplained kidney damage or (vi) unexplained low platelet levels.

    We will obtain clinical data from their medical records in addition to 1-2 blood samples, to determine whether they in fact have TTP or aHUS. Identifying cases will allow us to refine estimates of frequency and criteria for considering the diagnosis.

  • REC name

    North West - Greater Manchester West Research Ethics Committee

  • REC reference

    18/NW/0552

  • Date of REC Opinion

    13 Aug 2018

  • REC opinion

    Favourable Opinion