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Enrolling by invitationNo phase

Observational study of haemophilia care and disease course in Asia and Pacific

Surveys people with haemophilia to learn about their disease course and care.

Key facts

Who runs it
Novo Nordisk A/S
Where
Bangkok, ThailandSee the siteAlso in 3 other countries, 3 sites
Trial code
Registry title
Defeat Rare Disease in Asia and Pacific (APAC) DRDA - Haemophilia
Status
Enrolling by invitation
People taking part
244 people, planned
Started
31 Jan 2025
Planned end
19 Dec 2025
Type of study
Observational, 3 groups
Treatments tested
  • No treatment given
Record updated
24 October 2025

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for people with haemophilia A or B, their caregivers, doctors who treat haemophilia, and patient organisation experts. It is a survey, so no treatment is given.

Age
Patients of all ages. Caregivers of patients under 18 years (under 19 years in South Korea) must be 18 or older (19 or older in South Korea).
Sex
All sexes can join.
Disease stage
Haemophilia A or haemophilia B, with or without inhibitors, diagnosed for more than 2 years.

Main reasons for not taking part

  • Anyone who does not meet the joining conditions for their group
  • Not able to communicate in English or the language of their country
  • Does not agree to sign informed consent
  • Doctors with 5 years of experience or less
  • Patient organisation experts with 3 years of work experience or less

The registry criteria, word for word

Show all 10 criteriaShow less

Who can take part

  • For Experienced/Senior Treating Physicians
  • Experienced/senior haematologist treating haemophilia (adult or paediatric) or physician treating patients with haemophilia. (PWH), with greater than 5 years of experience
  • Able to communicate in English or country specific language
  • Agree/sign informed consent before data collection. For Patients Organisations
  • Patient organisation supporting haemophilia
  • Expert having greater than 3 years of work experience with the patient organisation
  • Expert level understanding of haemophilia landscape and care pathway in the relevant country
  • Able to communicate in English or country specific language
  • Agree/sign informed consent before data collection. For Patients/Caregivers; Patients of all age groups, diagnosed with haemophilia A or haemophilia B (with or without inhibitors) for greater than 2 years; For patients less than 18 years of age (*less than 19 years for South Korea), their caregivers aged greater than or equal to 18 years (*greater than or equal to19 years for South Korea) should sign the informed consent; *For South Korea, the adult age is 19 years; Able to communicate in English or country specific language; Agree/sign informed consent before data collection

Who cannot take part

  • There is no explicit exclusion criterion in this study, thus any participants group who answers "no" to any of the inclusion criteria will be excluded from the study

Where in Thailand

Also in 3 other countries, 3 sites

  • BangkokHospital not named in the registryNo longer taking part

About the trial

What the trial wants to find out

This study will help to better understand the course of disease in people with haemophilia (A or B [with or without inhibitors]) and the haemophilia care scenario in the selected countries and the experience so far in dealing with the condition. This is a survey-based study; hence no medications or other treatments will be provided to participants as a part of this study.

The 3 groups in the trial

  • Experienced/Senior Treating Physicians

    This group includes haematologists, paediatric haematologist and physicians treating patients with haemophilia (PWH)

    Treatment: No treatment given

  • Patients Organisations

    This group includes the organisations working closely to support patient with haemophillia (PWH) at a national/regional level

    Treatment: No treatment given

  • Patients/Caregivers

    This group includes patients with haemophilia and caregivers managing patients with haemophilia

    Treatment: No treatment given

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Defeat Rare Disease in Asia and Pacific (APAC) DRDA - Haemophilia
Plain-language title
Observational study of haemophilia care and disease course in Asia and PacificGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
24 October 2025