Haemophilia Clinical Trial
Official title:
Sociodemographic, Clinic and Psychosocial Aspects of People With Haemophilia in Portugal: a National Survey
Verified date | May 2017 |
Source | University of Minho |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Observational |
The purpose of this study is to implement a national survey to collect information regarding Portuguese people with haemophilia (PWH) on socio-demographic, clinical and psychosocial factors.
Status | Completed |
Enrollment | 146 |
Est. completion date | May 22, 2017 |
Est. primary completion date | May 22, 2017 |
Accepts healthy volunteers | No |
Gender | All |
Age group | N/A and older |
Eligibility |
Inclusion Criteria: - Haemophilia A or B - Portuguese nationality Exclusion Criteria: - Acquired Haemophilia - Psychiatric or neurological deficit |
Country | Name | City | State |
---|---|---|---|
Portugal | Life and Health Sciences Research Institute | Braga |
Lead Sponsor | Collaborator |
---|---|
University of Minho | Hospital Sao Joao, Portuguese hemophilia association and other congenital coagulopathies |
Portugal,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Health Related Quality of Life in Adults as assessed by A36Hemofilia-Qol | 1 year | ||
Primary | Health Related Quality of Life in Children as assessed by Canadian Haemophilia Outcomes-Kids Life Assessment Tool | Health Related Quality of Life in Children | 1 year | |
Primary | Pain Intensity | Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory). | 1 year | |
Primary | Pain Location | Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory). | 1 year | |
Primary | Pain Duration | Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory). | 1 year | |
Secondary | Total score of Haemophilia-related functional limitations as assessed by Haemophilia Activities List (HAL) and Pediatric HAL | 1 year | ||
Secondary | Anxiety score as assessed by PROMIS-Anxiety Short Form v1.0 | Assessmet of Anxiety | 1 week | |
Secondary | Depression score as assessed by PROMIS-Depression Short Form v1.0 | 1 week | ||
Secondary | Illness Perception as assessed by IPQ-R | 1 year | ||
Secondary | Pain Catastrophizing as assessed by CSQ - Catastrophizing Subscale | 1 year | ||
Secondary | Number of Joint Bleeds | 1 year | ||
Secondary | Presence of inibitors | 1 year | ||
Secondary | Number of target joints | 1 year | ||
Secondary | Type of sports practiced by PWH | 1 year |
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