Observational study of haemophilia care and disease course in Asia and Pacific
Surveys people with haemophilia to learn about their disease course and care.
Plain-language title generated from the registry record
Registry title: Defeat Rare Disease in Asia and Pacific (APAC) DRDA - Haemophilia
Key facts
- Where
- Kuala Lumpur, MalaysiaSee the site
AI summary: who the study is looking for
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
Read by machine on 12 November 2026.
Where in Malaysia
- Kuala LumpurHospital not named in the registryNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- Novo Nordisk A/S
- Trial code
- NCT07163260
- Record updated
- 24 October 2025
- Original description
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.Read full original descriptionShow less
Defeat Rare Disease in Asia and Pacific (APAC) DRDA - Haemophilia
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.
Inclusion: 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.
Exclusion: 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.