National Survey of People With Haemophilia in Portugal

NCT ID: NCT02870114

Last Updated: 2017-05-24

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 146 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2016-09-30
• Study Completion Date: 2017-05-22

Brief Summary

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.

Detailed Description

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).

Conditions

Haemophilia

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: CROSS_SECTIONAL

Eligibility Criteria

Inclusion Criteria

• Haemophilia A or B
• Portuguese nationality

Exclusion Criteria

• Acquired Haemophilia
• Psychiatric or neurological deficit

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Hospital Sao Joao

OTHER

Sponsor Role: collaborator

Portuguese hemophilia association and other congenital coagulopathies

UNKNOWN

Sponsor Role: collaborator

University of Minho

OTHER

Sponsor Role: lead

Responsible Party

Patrícia Ribeiro Pinto

Post-doctoral fellow

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Patrícia R Pinto, PhD

Role: PRINCIPAL_INVESTIGATOR

Life and Health Sciences Research Institute

Locations

Life and Health Sciences Research Institute

Braga, , Portugal

Countries

Portugal

Other Identifiers

520101.ID1825

Identifier Type: -

Identifier Source: org_study_id