Defeat Rare Disease in Asia and Pacific (APAC) DRDA

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ENROLLING_BY_INVITATION

Total Enrollment

244 participants

Study Classification

OBSERVATIONAL

Study Start Date

2025-01-31

Study Completion Date

2025-12-19

Brief Summary

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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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Detailed Description

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Conditions

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Haemophilia

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Experienced/Senior Treating Physicians

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

No treatment given

Intervention Type OTHER

No treatment given

Patients Organisations

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

No treatment given

Intervention Type OTHER

No treatment given

Patients/Caregivers

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

No treatment given

Intervention Type OTHER

No treatment given

Interventions

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No treatment given

Intervention Type OTHER

Eligibility Criteria

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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.

Eligible Sex

ALL

Accepts Healthy Volunteers

No