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Note: This record shows only 22 elements of the WHO Trial Registration Data Set. To view changes that have been made to the source record, or for additional information about this trial, click on the URL below to go to the source record in the primary register.

Register:	ClinicalTrials.gov
Last refreshed on:	16 December 2017
Main ID:	NCT02870114
Date of registration:	09/08/2016
Prospective Registration:	Yes
Primary sponsor:	University of Minho
Public title:	National Survey of People With Haemophilia in Portugal
Scientific title:	Sociodemographic, Clinic and Psychosocial Aspects of People With Haemophilia in Portugal: a National Survey
Date of first enrolment:	September 2016
Target sample size:	146
Recruitment status:	Completed
URL:	https://clinicaltrials.gov/show/NCT02870114
Study type:	Observational
Study design:
Phase:	N/A

Countries of recruitment
Portugal

Contacts

Name:	Patrícia R Pinto, PhD
Address:
Telephone:
Email:
Affiliation:	Life and Health Sciences Research Institute

Key inclusion & exclusion criteria

Inclusion Criteria:

- Haemophilia A or B

- Portuguese nationality

Exclusion Criteria:

- Acquired Haemophilia

- Psychiatric or neurological deficit

Age minimum: N/A
Age maximum: N/A
Gender: All

Health Condition(s) or Problem(s) studied

Haemophilia

Intervention(s)

Primary Outcome(s)

Health Related Quality of Life in Children as assessed by Canadian Haemophilia Outcomes-Kids Life Assessment Tool [Time Frame: 1 year]

Pain Location [Time Frame: 1 year]

Health Related Quality of Life in Adults as assessed by A36Hemofilia-Qol [Time Frame: 1 year]

Pain Duration [Time Frame: 1 year]

Pain Intensity [Time Frame: 1 year]

Secondary Outcome(s)

Number of target joints [Time Frame: 1 year]

Presence of inibitors [Time Frame: 1 year]

Anxiety score as assessed by PROMIS-Anxiety Short Form v1.0 [Time Frame: 1 week]

Depression score as assessed by PROMIS-Depression Short Form v1.0 [Time Frame: 1 week]

Pain Catastrophizing as assessed by CSQ - Catastrophizing Subscale [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]

Illness Perception as assessed by IPQ-R [Time Frame: 1 year]

Number of Joint Bleeds [Time Frame: 1 year]

Type of sports practiced by PWH [Time Frame: 1 year]

Secondary ID(s)

520101.ID1825

Source(s) of Monetary Support

Please refer to primary and secondary sponsors

Secondary Sponsor(s)

Portuguese hemophilia association and other congenital coagulopathies

Hospital Sao Joao

Ethics review

Results

Results available:
Date Posted:
Date Completed:
URL:

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