Marion Wilkens, as published in Alpha1 Journal 2/2018

When the conception of the COPD patient cohort COSYCONET The initial plan, which began in 2008, was to treat patients suffering from Alpha-1 antitrypsin deficiency Patients suffering from (AATM) were explicitly excluded from the study. Asthma and other lung diseases were also to be exclusion criteria. The researchers wanted to focus on patients whose classic symptoms were not indicative of another disease. On the other hand, the COPD COPD should be considered and investigated from as many perspectives as possible. It was known that the structural and functional changes in COPD do not only affect the lungs, and relevant comorbidities exist. However, the relationship with these comorbidities and their interactions with the lung disease had not yet been sufficiently investigated to develop new, potentially individualized treatment approaches. It seemed logical that expanding the initially restrictive inclusion criteria would offer the advantage of identifying and differentiating various phenotypes.

AATM patients urgently needed

When the recruitment phase for the COPD patient cohort began at the end of 2010, all patients aged 40 and older who exhibited symptoms of COPD were eligible for inclusion. It was therefore clear that people suffering from AATD would automatically be included, although they were not initially targeted. However, in order to be able to answer questions related to this condition at a later date, at least 100 AATD patients had to be included. Since this target was not apparent at the beginning of the final recruitment year in 2013, action was required. Prof. Dr. Dr. Robert Bals, who heads the COSYCONET biobank and the German Registry for Alpha-1 Antitrypsin Deficiency, suggested requesting support from the patient organization Alpha1 Deutschland e. V. The organization's office contacted all groups located within reasonable proximity of a COSYCONET study center – with great success. With the completion of recruitment on December 31, 2013, 167 AATM patients were participating.

What should be evaluated?

AATD still poses significant challenges for researchers and physicians. Besides the goal of improving early detection of the disease, researchers are also striving to shed light on the complex web of its many comorbidities. The COSYCONET cohort offers a unique opportunity to compare patients with AATD-induced COPD to those suffering from classic COPD.

The first project

Under the title "Comparison of Comorbidity and Inflammation Phenotypes in Patients with Alpha-1 Antitrypsin Deficiency (AATD) versus Patients without AATD," Prof. Dr. Dr. Bals is currently leading the initial analyses at Saarland University in Homburg. Researchers have observed that the patterns of comorbidities differ between patients with AATD and those without. The aim now is to verify this observation using scientific methods and to examine the various comorbidities in more detail. Tobacco use, for example, is one aspect to be investigated further. Data from patients in each group who can be compared with regard to their smoking habits are being selected. The FEV1 value is being examined in more detail. This is the amount of air the patient can forcefully and as quickly as possible exhale within one second – in our study, after the administration of a bronchodilator.

The frequency of exacerbations and quality of life will also be compared. Participants were interviewed in detail about both aspects during their visit to the study center. The investigation of biomarkers opens up new avenues in research. Biomarkers are specific biological characteristics that are measurable and can indicate pathological processes in the body. This project will examine in detail whether the biomarker profiles of the two patient groups differ. Initial results of this project are expected by the end of the year.

COSYCONET will continue

All patients participating in COSYCONET will be examined regularly for at least 10 years. This provides an opportunity to more precisely determine the various factors that influence the development of COPD. The goal is to find new treatment approaches. And with a disease as complex as COPD, it is also important to tailor treatment options to the individual patient.

COSYCONET Quick Info

COSYCONET is the largest COPD cohort in Germany. The acronym stands for "German COPD and Systemic Consequences – Comorbidities Network". It refers to a consortium of 30 specialized clinics, research institutions, and universities that work together.
The COSYCONET project aims to investigate the causes, progression, and comorbidities of the chronic lung disease COPD. With the end of the recruitment phase in December 2013, 2,741 patients were enrolled. The analysis of the first data is currently underway. The Federal Ministry of Education and Research is funding COSYCONET as part of the Asthma/COPD Competence Network. The participating institutions are pooling their resources and jointly seeking ways to improve the diagnosis and treatment of these respiratory diseases in the future. Professor Dr. Claus Vogelmeier from Marburg is the spokesperson for the Competence Network.