PB0292 - Latin-American von Willebrand Disease Registry (RL-VWD): registration of congenital and acquired VWD patients in Latin-America; a randomized controlled trial. Preliminary results.

Sunday, June 23, 2024

13:45 – 14:45 ICT

Room: Exhibition Hall

Co-Author(s)

AW

Adriana I. Woods, PhD

Departamento de Hemostasia y Trombosis. Academia Nacional de Medicina.
Ciudad Autonoma de Buenos Aires, Ciudad Autonoma de Buenos Aires, Argentina

Co-Author(s)

MV

Maximiliano Villagra

MD
Hospital Italiano
CABA, Ciudad Autonoma de Buenos Aires, Argentina
NG

Natalia Goncalvez

MD
Instituto de Investigaciones Epidemiologicas, Academia Nacional de Medicina
CABA, Ciudad Autonoma de Buenos Aires, Argentina
SC

Santiago Castera, Sr.

Biochemist, Ms.
Departamento de Hemostasia y Trombosis. Academia Nacional de Medicina
CABA, Ciudad Autonoma de Buenos Aires, Argentina
MC

Maria M. Casinelli

Technician
Department of Hemostasis and Thrombosis, Hematological Research Institute, National Academy of Medicine.
CABA, Ciudad Autonoma de Buenos Aires, Argentina
AB

Alicia N. Blanco

PhD
Departamento de Hemostasia y Trombosis. Academia Nacional de Medicina.
CABA, Ciudad Autonoma de Buenos Aires, Argentina
MA

María F. Alberto

Biochemist, PhD
Departamento de Hemostasia y Trombosis, Instituto de Investigaciones Hematologicas, Academia Nacional de Medicina
Ciudad Autonoma de Buenos Aires, Ciudad Autonoma de Buenos Aires, Argentina

Presenting Author(s)

Analia Sánchez-Luceros, MD, PHD

MD, PhD
Departamento de Hemostasia y Trombosis. Academia Nacional de Medicina.
CABA, Ciudad Autonoma de Buenos Aires, Argentina

Background: There is limited information on the prevalence/management of von Willebrand disease (VWD) in developing countries. Some countries in Latin-America and the Caribbean have registries of severe disease that carries highest costs for regional health systems.
This is a project of a Latin-American network of centers and professionals to perform a retrospective/prospective study, using a database available online, common to all.

Aims: To record the bleeding history, treatment and events of VWD patients in the region and to investigate the influence of VWD on quality of life.
Website:https:/clinicaltrials.gov/study/NCT04279717.
RL-VWD was registered on 2020-02-07. Registration number: NCT04279717.

Methods: Observational and multicentric study.
Study population: Subjects with acquired and congenital VWD.
Description of clinical presentation,registration of the bleeding history, response to treatment, adverse events, pregnancies outcome.
Online informed consent will be obtained from the investigators to participate.
Inclusion criteria:
• Historically lowest VWF:Ag and/or VWF:RCo and/or VWF:CB < 0.50IU/ml and/or FVIII:C < 0.50IU/ml.
• Men and women, no limit of age.

Results: The study started recruiting in November 2021in Argentina, with 7 participant centers.
Until December 2023, 475 patients were recruited. the results are shown in Table 1, and professionals, in Table 2.

Conclusion(s): Disease registries have proven useful in increasing and extending knowledge regarding a particular disease, including changing health policies to adapt them to regional needs.
In our region, there is no epidemiological data7knowledge of the form of presentation of VWD. This registry will allow us to obtain substantial information on the disease in our region and, more importantly, it may serve to promote the implementation of collaborative (or collaborative) research projects.
We expect to increase the number of participant centers from other countries of the region.