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.

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Key information

Conditions

Haemophilia Blood Coagulation Disorders Blood Coagulation Disorders, Inherited Coagulation Protein Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemophilia A Hemorrhagic Disorders

Sex eligibility

All sexes

Study type

Observational

Primary location

Novo Nordisk Investigational Site, Bangalore, Karnataka, India

Who can participate

Only the study team can determine whether someone qualifies for participation.

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

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 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.

Treatment and study plan

No treatment given

Other

No treatment given

Primary outcomes

Estimated prevalence of haemophilia

Time frame: From start of data collection to end of data collection (approximately 5 months)

Proportion [%] of individuals in a population
Estimated incidence of haemophilia

Time frame: 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 (%)

Time frame: From start of data collection to end of data collection (approximately 5 months)

proportion [%] of individuals in a population

Sponsors and collaborators

Lead sponsor

Novo Nordisk A/S

Industry

Registry information

Important dates

Study start: 2025
Primary completion: 2025
Study completion: 2025
First posted: Sep 9, 2025
Registry last updated: Oct 24, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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Recruiting