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
- Seoul, South KoreaSee the site
Where in South Korea
- SeoulSeoul, South KoreaNo 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?
Trial 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.