Old and new from Europe – an attempt to explain the many abbreviations (ERS, ELF, the ERNs or EARCO)...

Alpha1 Germany eV.

I recently heard at an event that nothing is happening in Europe regarding lung research and Alpha-1; if anything, you only hear about it from the Americans. That's not true! Perhaps it's discussed so little because you first have to explain all the abbreviations to understand the reports. And so that we can continue to report on the many positive developments taking place in Europe, we will try to explain the most important abbreviations below: First, let's mention ERS. Since I always report from the DGP Congress (you remember, that's the German Society for Pneumology and Respiratory Medicine), this is the easiest to explain. Strictly speaking, ERS is what the DGP is in Germany – only for Europe.

ERS (European Respiratory Society) The ERS is now an international society that brings together physicians, medical professionals, scientists, and other experts in respiratory medicine. It is one of the leading medical organizations in the field of respiratory diseases, with a growing membership in over 160 countries.

The mission of the ERS is to promote lung health in order to alleviate disease symptoms and advance standards in respiratory medicine worldwide. This includes science, education, and advocacy.
Lung diseases are at the heart of our work. One in eight people in Europe dies from a lung disease – that translates to one person every minute. Besides well-known diseases like asthma and lung cancer, chronic obstructive pulmonary disease (COPD) is now the third leading cause of death. Alpha-1 antitrypsin deficiency is much less common. The ERS is committed to promoting scientific research and organizes numerous scientific and educational events, including the ERS International Congress (the largest congress in the field of respiratory medicine). It also plays a key role in raising public and policy awareness of lung diseases. For more information, please visit: https://www.ersnet.org

Now this is another one of those circles where experts meet, but something's missing, isn't it? Exactly, what does a doctor do without a patient?

Therefore, in 2000 the European Respiratory Society (ERS) established the European Lung Foundation ELF (European Lung Foundation) Founded with the aim of bringing together patients, the public, and pulmonology professionals to make a positive contribution to pulmonary medicine. More information at: http://www.europeanlung.org

Those were two abbreviations that have been around for a long time and are very important to us. Now we come to the newer things, for example, what are ERNs? The abbreviation always comes up in the lectures at RWTH Aachen University, because they are such an ERN competence center for the liver (further centers can be found at: www.rare-liver.eu/index.php/collaborative-centres). The lung centers can be found at: https://ern-lung.eu/reference-centers-2/.

But what are the ERN (European Reference Networks). The basic idea behind the ERNs is to link highly specialized European clinical facilities (so-called Centers of Expertise, EZs) into Europe-wide networks. Approximately 30 million people in the EU live with one of the roughly 8,000 rare diseases. Given the fragmented expertise regarding these often highly complex diseases and the small number of affected patients per disease, EU-wide collaboration on this topic is of considerable benefit. In 24 thematic ERNs, including ERN Lung (www.ern-lung.eu) and ERN Liver (www.rare-liver.eu), over 900 highly specialized medical teams (300 clinics, 900 healthcare units "teams") from 26 countries will collaborate on a wide range of issues. This pooling of expertise across the EU is intended to benefit thousands of patients annually whose conditions require a specific combination of highly specialized healthcare services in fields where expert knowledge is scarce. The European Reference Networks (ERNs) officially commenced their work on March 1, 2017. The formal launch took place on March 9 in Vilnius, Lithuania, during the 3rd ERN Conference, which brought together representatives of all member state networks, patients, and policymakers.

And what about us patients – where can we have a say in this?

In order to also incorporate the interests of patients into the ERNs, a [position/organization] was created for each ERN disease grouping. ePAG (European Patient Advocacy Group) These ePAGs bring together elected patient representatives and patient organizations to ensure that the voice of patients is clearly heard throughout the entire ERN development process.
Of course, Alpha-1 patients are always involved in the relevant groups.

All that remains is to explain the acronym EARCO, which is important for us; it is the newest acronym – the newest working group – and this can achieve a great deal for us:

EARCO (European Alpha-1 Research Collaboration) EARCO is a pan-European network dedicated to advancing clinical research and education in the field of alpha-1 antitrypsin deficiency (AAT deficiency). Its core project is the pan-European AAT deficiency registry, a collaboration that will provide practical data for patients with AAT deficiency. EARCO's vision is to improve the early detection of AAT deficiency, better understand the pathogenesis of the disease, and ensure optimal access to effective care. The collaboration also places a strong emphasis on putting people with AAT deficiency at the center of research. This group has just been launched (www.ersnet.org/research/earco-europeanalpha-1-research-collaboration).

Specific objectives: To establish a network of researchers and clinical experts chaired by Dr. Marc Miravitlles (Hospital Universitary Vall d'Hebron, Barcelona, Spain) and Dr. Timm Greulich (University Hospital Giessen and Marburg, Marburg, Germany) to lead clinical and research priorities in Europe.

Further destinations:

• A collaboration between patients and doctors to identify the most important priorities in the area of AAT deficiency.
• Creation of the EARCO registry, a European registry for AAT deficiency. This is intended to facilitate patient recruitment for research and quality improvement initiatives in all healthcare systems. The entire system will be implemented with a quality assurance system and a self-learning mechanism.
• Facilitating the application process for support of the EARCO registry.
• Support and promotion of young scientists in the field of AAT deficiency through participation in activities.
• Increasing the number and quality of clinical trials conducted in the context of AAT deficiency across Europe.

The register:
The aim of the pan-European AAT deficiency registry is to collect forward-looking, standardized, practice-oriented data in more than 20 countries with 3,000 patients over three years, which is necessary for understanding the following points:

• Origin story
• The influence of risk factors
• The role of augmentation therapy in predicting disease severity

Stakeholders: The EARCO Steering Committee comprises the CRC chairs, clinical researchers, experts in cross-disciplinary research, and patient representatives from the Alpha-1 Global Network. I am one of the two patient representatives, and I will do my best to represent us patients well within this group.