Validation Study of Quality of Life Questionnaire QLQ-AA/PNH-54

• Research type

  Research Study

• Full title

  Phase IV Validation Study of the Quality of Life Questionnaire For Patients with Aplastic-Anaemia and/or Paroxysmal Nocturnal Haemoglobinuria (QLQ-AA/PNH-54)

• IRAS ID

  360234

• Contact name

  Louise Arnold

• Contact email

  louisearnold@nhs.net

• Sponsor organisation

  Leeds Teaching Hospitals NHS Trust

• Duration of Study in the UK

  2 years, 0 months, 1 days

• Research summary

  We are testing a new questionnaire, called the QLQ-AA/PNH-54, to see how well it works. This questionnaire is designed to help us better understand the quality of life for people living with Aplastic Anaemia (AA) and/or Paroxysmal Nocturnal Haemoglobinuria (PNH).
  The questionnaire has 54 questions, which are grouped into 12 sections (or "scales"). This research will help make sure the questionnaire is accurate, clear, and useful for patients and healthcare professionals.
  

• REC name

  North West - Liverpool Central Research Ethics Committee

• REC reference

  25/NW/0291

• Date of REC Opinion

  27 Jan 2026

• REC opinion

  Further Information Favourable Opinion