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Research Project

Pathways of Care in Alpha-1 antitrypsin Deficiency

Principal Investigator:
Joanna Chorostowska-Wynimko / Maria Sucena
Center:
National Institute of Tuberculosis and Lung Diseases / Centro Hospitalar do Porto
City/Country:
Warsaw (Poland) / Porto (portugal)
Start date:
May 2021
Status:
Recruiting
Contact E-mail:
j.chorostowska@gmail.com / maria.sucena@hotmail.com
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Introduction

Identifying the different pathways of care through which patients with AATD are diagnosed and managed within the different healthcare systems across Europe is a challenge but at the same time would provide information invaluable both for AATD experts and patients

In collaboration with EARCO and AATD core group of the European Respiratory Network for rare respiratory diseases (ERN-LUNG), we intend to try and collect such data

Objectives

A survey aimed at professionals involved in the patients referral, AATD diagnosis and management has now been created, and aims to understand:

  1. How often patients with AATD are referred for specialist diagnostic, assessment and treatment
  2. The type/availability of AATD testing methods in different countries and how these are implemented
  3. If patients are routinely followed in ERN-LUNG reference centres, who is involved in the provision of AATD therapy, and if response to treatment is routinely assessed

Inclusion criteria

Helathcare professionals involved in the care of patients with AATD: clinicans and professionals involved in diagnosis

Brief summary

Data obtained from the survey will be reported in a research manuscript and will provide much-needed information for improving the care for patients with AATD across Europe.

If you are involved in the diagnosis and management of patients with AATD, i.e., AATD testing, genetic counselling, pulmonology/primary care, etc., we would like to ask you to complete this survey using the following link:

https://www.surveymonkey.co.uk/r/EurPathwaysAATDSurvey

Please do forward this link to colleagues outside of AATD expert centres who refer patients for AATD diagnostic, their perspective is most valued as well

We would appreciate if you could complete the survey by June15th

Survey development was supported by CSL Behring,