An observational study in Haemophilia, sponsored by University of Minho. Completed at 1 site in Portugal. Per ClinicalTrials.gov, last updated 2017-05-24.
Sponsored by University of Minho · 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.
This is a cross-sectional design investigation focused on the socio-demographic, clinical and psychosocial characterization of Portuguese people with haemophilia (PWH). All PWH, registered in the Portuguese Hemophilia Association (APH) will be identified in APH registries and contacted through mail, in order to be invited to participate in the first Portuguese survey on haemophilia. In case of acceptance, patients must sign the Informed Consent, fill in the questionnaires and send both back to the investigation team through a pre-paid envelope in the national mail system.
PWH of all ages are invited to participate in this survey. Adults (aged 18 and over) and children/youth from 10 to 17 will answer the questionnaires by self report. Parents of small children (0 to 9) will fill in the proxy versions. All questionnaires are adapted for the specific age groups.
This study will comply with ethic guidelines and was approved by the Life Sciences and Health Ethics Subcommittee (University of Minho) and is registered on the Portuguese authority for data collection (CNPD).
866 studies on the registry are indexed under Hemophilia A; 137 are open to participants now.
This study's enrollment of 146 is above the median of 80 across 314 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →University of Minho is the lead sponsor of 37 studies on the registry; 9 are open to participants now.
Counted across the registry records on this site, refreshed daily.
People with Haemophilia A or B, of any age and gender, registered in the Portuguese Haemophilia Association
Exclusion Criteria:
Health Related Quality of Life in Adults as assessed by A36Hemofilia-Qol
Time frame: 1 year
Health Related Quality of Life in Children as assessed by Canadian Haemophilia Outcomes-Kids Life Assessment Tool
Health Related Quality of Life in Children
Time frame: 1 year
Pain Intensity
Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory).
Time frame: 1 year
Pain Location
Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory).
Time frame: 1 year
Pain Duration
Pain Questionnaire developed specifically for this investigation to assess PWH (based on Wallny's Pain Questionnaire for PWH and Brief Pain Inventory).
Time frame: 1 year
Total score of Haemophilia-related functional limitations as assessed by Haemophilia Activities List (HAL) and Pediatric HAL
Time frame: 1 year
Anxiety score as assessed by PROMIS-Anxiety Short Form v1.0
Assessmet of Anxiety
Time frame: 1 week
Depression score as assessed by PROMIS-Depression Short Form v1.0
Time frame: 1 week
Illness Perception as assessed by IPQ-R
Time frame: 1 year
Pain Catastrophizing as assessed by CSQ - Catastrophizing Subscale
Time frame: 1 year
Number of Joint Bleeds
Time frame: 1 year
Presence of inibitors
Time frame: 1 year
Number of target joints
Time frame: 1 year
Type of sports practiced by PWH
Time frame: 1 year
Plan to share: No
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This study is completed, as verified in May 2017. You cannot join it, but the record below documents what was studied.
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