Survey Evaluating the Psychosocial Effects of Living With Haemophilia

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

COMPLETED

Total Enrollment

1236 participants

Study Classification

OBSERVATIONAL

Study Start Date

2011-06-03

Study Completion Date

2012-02-29

Brief Summary

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This study is conducted in Africa, Asia, Europe, North America and South America.

The purpose of the survey is to identify the key psychosocial issues affecting patients with haemophilia.

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Detailed Description

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Conditions

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Congenital Bleeding Disorder Haemophilia A Haemophilia B Haemophilia A With Inhibitors Haemophilia B With Inhibitors Relatives to/Carers of Patients

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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A

No treatment given

Intervention Type OTHER

No treatment given. Participants are to complete a questionnarie in the study.

Interventions

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No treatment given

No treatment given. Participants are to complete a questionnarie in the study.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Males with haemophilia A or B (with or without inhibitors)
* Parents/carers of children aged below 18 years with haemophilia A or B (with or without inhibitors)
* Patients currently receiving treatment for haemophilia with one of the following: replacement factor VIII or replacement factor IX or a bypassing agent (recombinant factor VIIa or aPCC (Activated prothrombin complex concentrate))
* Patients with haemophilia, not currently receiving treatment with replacement factor VIII or IX or a bypassing agent (as appropriate), but who have had at least one spontaneous bleed into one or more joints within the last 12 months
* Subjects must have access to the internet, either at home or at a location convenient to them, be able to complete a paper questionnaire, or be available to attend a face-to-face interview (Algerian subjects only), to participate in the survey