Attitudes of haemophilia carriers towards prenatal diagnosis

• Research type

  Research Study

• Full title

  A qualiative study exploring the attitudes of haemophilia carriers towards prenatal diagnosis and management of delivery.

• IRAS ID

  114964

• Contact name

  Rezan Kadir

• Contact email

  rezan.abdul-kadir@nhs.net

• Sponsor organisation

  UCLH/UCL/Royal Free Joint Research Office, UCL

• Research summary

  Aims:
  • To explore the attitudes of haemophilia carriers towards prenatal diagnosis and management of delivery.
  • To compare attitudes and acceptability of prenatal diagnosis in light of new advances in non-invasive methods.

  Methodology:

  • Haemophilia carriers registered at the centre aged 18-60 will be invited to participate and complete a structured questionnaire.
  • Data will include information regarding the severity to haemophilia, uptake and reasons for and against prenatal diagnosis and the influence that knowledge of prenatal diagnosis has on mode of delivery.
  • Of particular importance will be comparing attitudes towards new non-invasive forms of prenatal diagnosis and how they affect acceptability and uptake of prenatal diagnosis.

  Primary outcome
  • Attitudes of carriers towards prenatal diagnosis
  o Influencing factors for and against
  o Difference in uptake of invasive versus non- invasive methods

  Secondary Outcome
  • Impact of PND on mode of delivery

• REC name

  London - Bromley Research Ethics Committee

• REC reference

  13/LO/0600

• Date of REC Opinion

  6 Aug 2013

• REC opinion

  Further Information Favourable Opinion