VHIR coordinates a new international registry of patients with alpha-1 antitrypsin deficiency

EARCO project expects to include data from 3,000 patients in the next 3 years, which will allow progress in the knowledge of this rare disease.

07/07/2020

Alpha-1 antitrypsin deficiency (AATD) is a rare genetic disease with a prevalence of one in 5,000 people in our country. With the aim of expanding knowledge about the evolution and treatment of this disease, Dr. Marc Miravitlles and Dr. Miriam Barrecheguren, researchers from the Pneumology research group at VHIR and pulmonologists at Vall d’Hebron University Hospital, coordinate a new international registry of DAAT patients.

DAAT is a disease that predisposes to the development of various pathologies, mainly pulmonary emphysema, which can be serious and need a lung transplant. Currently, there is only one specific treatment, known as augmentative treatment, which consists of lifelong administering alpha-1 antitrypsin protein intravenously every one or two weeks.

The EARCO (European Alpha-1 Research Collaboration) initiative is a collaborative project promoted by the European Respiratory Society (ERS) and coordinated by VHIR, whose objective is to promote research and knowledge about DAAT. Its main project is the creation of an international DAAT registry in which experts and patients participate. Currently, it has 70 centers in 24 countries. “As this is a rare disease with low prevalence, having international registries is essential in order to know the evolution of the disease and to be able to launch research studies”, says Dr. Miravitlles. Thus, this registry will be useful to carry out projects between multiple centers and will allow to have enough candidate patients to participate in new clinical trials.

EARCO began registering patients in February 2020 and expects to include data from more than 3,000 people from all over Europe over the next 3 years with the aim of understanding the evolution of DAAT, as well as the effect of augmentative therapy on the prognosis of the disease. This registry is the first in the world to include data on such a high volume of DAAT patients.

A hospital with great assistance and research activity on DAAT

The Pneumology service of Vall d’Hebron Hospital has the Catalan DAAT Center, where the diagnosis and follow-up of the largest number of DAAT patients in Spain is carried out. In addition, VHIR makes a great effort to investigate different aspects of the diagnosis and treatment of the disease.

Vall d’Hebron Hospital was a pioneer in the State in starting the specific treatment program with augmentative therapy for DAAT and founder of the Spanish registry of the disease (REDAAT), which has included more than 800 patients with severe deficits.

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