Latin-American Von Willebrand Disease Registry

Academia Nacional de Medicina

Status: Unknown

Conditions: Von Willebrand Disease

Treatments: Other: Observation

Study type: Observational

Funder types: Other

Identifiers

NCT04279717

Protocol_3081

Details and patient eligibility

About

Establish a Latin-American network of centers and professionals with the aim of:

• To register VWD patients in retrospective/prospective study, using a database, available online, common to all
• To register the bleeding history, the treatment and the events of VWD patients in the region
• To investigate the influence of VWD on quality of life

Full description

von Willebrand disease (VWD) is the most common autosomal bleeding disorder, mostly inherited as dominant trait. VWD is due to deficiency/abnormality of von Willebrand factor (VWF). The prevalence of VWD is unknown, but estimated as 0.1% to 1% of the general population. Although the autosomal inheritance pattern would suggest an equal distribution of male and female patients, the disease is diagnosed in more females because of female-specific hemostatic challenges: menses, ovulation, pregnancy and childbirth. Diagnosis of VWD is made by assessing personal and family history of bleeding, physical examination and completed with specific laboratory tests.

There is limited information on the epidemiology of VWD in developing countries. Some countries in Latin America have registries of severe disease that, although it is the rarest form, carries the highest costs for regional health systems. So that the prevalence of clinical symptoms and laboratory features of the disease as well as the management of the disease in Latin America is unknown.

The present project aims to establish a network of centers and professionals with the objective to register and investigate all patients with VWD in Latin America, using a database available online common to all, to gain understanding about phenotype, genotype and management of VWD in the region.

Enrollment: 500 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

Inclusion criteria

• Historically lowest VWF:Ag and/or VWF:RCo and/or VWF:CB < 0.50 IU/ml and/or FVIII:C < 0.50 IU/ml
• All types of VWD
• All ages

Exclusion criteria

• Patient without consent to participate

Trial design

500 participants in 2 patient groups

Subjects with von Willbrand Disease Acquired

Treatment:

Other: Observation

Other: Observation

Subjects with von Willbrand Disease Congenital

Treatment:

Other: Observation

Other: Observation