Survey Evaluating the Psychosocial Effects of Living With Haemophilia

Haemophilia, Experiences, Results and Opportunities (HERO): A Community-based Evaluation of the Psychosocial Effects of Haemophilia on Patients and Their Carers

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01322620

Acronym

HERO

Enrollment

1236

Registered

2011-03-24

Start date

2011-06-03

Completion date

2012-02-29

Last updated

2017-02-23

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

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

Brief summary

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.

Interventions

OTHERNo treatment given

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

Study design

Observational model

COHORT

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

MALE

Age

18 Years to No maximum

Healthy volunteers

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

Exclusion criteria

* Inability to understand and comply with written and verbal instructions unless assisted at the haemophilia treatment centre (HTC) or by a relative

Design outcomes

Primary

Measure	Time frame
To quantify the extent of key psychosocial factors affecting patients with haemophilia in their daily lives	After 6 weeks (recruitment and data collection)

Secondary

Measure	Time frame
To quantify how psychosocial factors are associated with treatment outcomes, compliance, health and general well-being	After 6 weeks (recruitment and data collection)

Countries

Canada, Spain, United Kingdom

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026