Brief Title
Survey Evaluating the Psychosocial Effects of Living With Haemophilia
Official Title
Haemophilia, Experiences, Results and Opportunities (HERO): A Community-based Evaluation of the Psychosocial Effects of Haemophilia on Patients and Their Carers
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.
Study Type
Observational
Primary Outcome
To quantify the extent of key psychosocial factors affecting patients with haemophilia in their daily lives
Secondary Outcome
To quantify how psychosocial factors are associated with treatment outcomes, compliance, health and general well-being
Condition
Congenital Bleeding Disorder
Intervention
No treatment given
Study Arms / Comparison Groups
A
Description:
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Recruitment Status
Other
Estimated Enrollment
1236
Start Date
June 3, 2011
Completion Date
February 29, 2012
Primary Completion Date
February 29, 2012
Eligibility Criteria
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
Gender
Male
Ages
18 Years - N/A
Accepts Healthy Volunteers
No
Contacts
Global Clinical Registry (GCR, 1452), ,
Location Countries
Canada
Location Countries
Canada
Administrative Informations
NCT ID
NCT01322620
Organization ID
F7HAEM-3911
Secondary IDs
U1111-1119-7128
Responsible Party
Sponsor
Study Sponsor
Novo Nordisk A/S
Study Sponsor
Global Clinical Registry (GCR, 1452), Study Director, Novo Nordisk A/S
Verification Date
February 2017