Haemophilia
Conditions
Brief summary
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.
Interventions
OTHERNo treatment given
No treatment given
Sponsors
Novo Nordisk A/S
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Inclusion criteria
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 1. Patients of all age groups, diagnosed with haemophilia A or haemophilia B (with or without inhibitors) for greater than 2 years. 2. 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. 3. Able to communicate in English or country specific language. 4. Agree/sign informed consent before data collection.
Exclusion criteria
* 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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Estimated prevalence of haemophilia | From start of data collection to end of data collection (approximately 5 months) | Proportion \[%\] of individuals in a population |
| Estimated incidence of haemophilia | From start of data collection to end of data collection (approximately 5 months) | Number of new cases of haemophilia |
| Estimated proportion of patients with haemophilia (PWH) who develop inhibitors (%) | From start of data collection to end of data collection (approximately 5 months) | proportion \[%\] of individuals in a population |
Countries
India, Malaysia, South Korea, Thailand
Outcome results
None listed