Attending the first virtual international congress of the European Respiratory Society (ERS): Facts, figures and achievements
Author
Marion Wilkens, Chairwoman Alpha1 Germany eV.
Over 33,000 participants participated in the ERS Congress 2020. Thanks to complete virtualization, more physicians, researchers, and healthcare professionals from around the world were able to participate than ever before.
From September 6th to 9th, 263 live sessions simultaneously about 10 channels streamed – an impressive virtual live event, complemented by 236 recorded E-poster and training sessions and e-poster presentations with more than 4,200 original abstracts.
No, we didn't hear everything, we only tried to extract the information that was important to us as Alphas.
The first day of the ERS Congress was dominated by Covid-19. There was a lot of information, not all of it sounded good to a patient, but ultimately it's reassuring to know that researchers and doctors worldwide are working on this issue and that new findings are still emerging every day. We've already reported on many of these topics. It's a search for mechanisms, biomarkers, the correct interpretation of data, and also the accurate communication of the results.
For us patients, the search for effective medications and a vaccine is paramount. The NIH, the US National Library of Medicine (ClinicalTrails.gov), has currently registered 219 vaccine trials out of 3,232 registered clinical trials for COVID-19. Professor Tobias Welte of Hannover Medical School (MHH) nevertheless does not expect general availability before summer 2021. Anyone who wants to know more is welcome to read through the ERS website.
The following days also brought a wealth of information on COPD, asthma, coughs, rehabilitation, and far too little about Alpha1. We would like to mention the most important point:
- Alpha-1 antitrypsin deficiency is a cause of bronchiectasis and EMBARC (the registry for bronchiectasis) considers a study to determine the actual prevalence of alpha-1 antitrypsin deficiency through systematic testing to be necessary.
- A poster from the EARCO group presented a survey of physicians. The survey aimed to determine what research priorities physicians considered. The three most important points were:
- Experienced clinicians in the field of AATD point out that awareness as well as early and accurate diagnosis of AATD need to be improved.
- The timing and dosage of the augmentation therapy are still uncertain.
- A deeper understanding of the risk factors for rapid progression and poor outcomes is one of the main priorities of AATD research.
- Presentation from Hannover Medical School (MHH): The authors hypothesize that elevated concentrations of acute-phase proteins such as Alpha1 correlate with a poor prognosis for cancer patients. They present findings that AAT supports the growth of NSCLC cells, protects against STS-induced cell death, and enhances LPS-mediated pro-tumor properties. In other words: Less alpha-1 antitrypsin = less cancer!
You can find more information here.
- New findings in pediatric pulmonology: Results from the following study suggest that the epigenetic status of the newborn influences respiratory health and disease throughout life: About the study.
This is interesting for us because it would mean that the course of a lung disease is probably already set in childhood.
On the Saturday before the ERS Congress, the meeting organized by the EEuropean Lung FThe foundation (ELF) organized a patient day, and naturally, much was discussed about Covid-19: What does our work look like now, what has changed, and how do we deal with it? The exchange of experiences was very helpful, as were the two presentations that day.
- Improving well-being: from illness to symptom-oriented support
- Psychological aspects and mind/body interventions for people with respiratory diseases
Both presentations will be available on the ELF website shortly. Please feel free to contact us if you are interested.
Have you ever asked yourself: What good has this situation brought me? No? Well, you should. In the case of the pandemic, perhaps it's having more time with family or learning new skills? We'd also be happy to hear about the positive aspects of this situation you've gained. Erfahrungen@alpha1-deutschland.org.
The congress has once again demonstrated the immense contribution of doctors, researchers, and everyone working in the healthcare system. The ELF has created a video to express their gratitude, which we wholeheartedly endorse. Watch the video.
New flyer from the Respiratory League for patients with AATD
The Respiratory League, together with the Alpha-1 Centers, has compiled some information for patients with AATD. We have provided consultation to the Flyers We helped to create the flyers and are pleased if they are used:
In addition to a Overview of the disease The flyers cover the following topics: Nutrition in cases of liver involvement, Rehabilitation at AATM and Degree of disability.
Everyday tips:
- Udo Held sent us an overview of the travel expenses that health insurance companies pay without prior authorization. Click here to go to the article.
- Prolonged illness due to Alpha-1 – and where does the money come from? An article about occupational disability and reduced earning capacity, written and researched by Heike Isensee: To the article.
- New on our YouTube channel: „Sewing masks“ – a video by Heike Isensee
Do you have a tip for us? Then write to us at: Erfahrungen@alpha1-deutschland.org
Corona Update
Helpful blog by Prof. Dr. med. Gratiana Steinkamp and her husband Dipl.-Psych. Dr. Gerald Ullrich
We would like to recommend the Blog by Prof. Dr. med. Gratiana Steinkamp and her husband, Dipl.-Psych. Dr. Gerald Ullrich. Ms. Steinkamp is well known to members for her excellent summaries of our medical presentations in the Alpha1 Journals. Her blog contains well-researched and compiled information (not only) on corona: https://www.med-wiss.blog/category/medizinische-nachrichten/corona/
Covid-19: Current status of vaccine development
Book recommendation
After the summer holidays comes the autumn holidays – many of us aren't traveling, but are making ourselves comfortable at home. Our book recommendation for this: Annette Hendl „Living with long-term oxygen therapy“.
The story of Anette Hendl's very moving experience with COPD, up to and including life with long-term oxygen therapy, is described.
A must-read – Click here for the author's book presentation..
Save the date: Children's and Youth Day of Alpha1 Germany eV 2020 – virtual
Due to the pandemic, we are taking a new approach and will be holding the Children and Youth Day virtually. We are pleased to introduce Dr. Eva-Doreen Pfister, Senior Physician at Hannover Medical School specializing in pediatric gastroenterology, as a highly dedicated speaker. She will be presenting on 31.10.2020 in the morning a lecture on the topic „Alpha-1 Antitrypsin Deficiency – 2020 Update: Special Features in Childhood and Adolescence“We will be holding a presentation on our YouTube channel, followed by an opportunity for a joint chat and Q&A session. Further information and possibly additional speakers will follow. You can register for the chat now at kiju@alpha1-deutschland.org Register and you will receive your dial-in details a few days before October 31, 2020. Please note that without registering you can watch the presentations, but you will not be able to participate in the subsequent Q&A session.
Further event information
Patient webinar „Alpha1 Antitrypsin Deficiency and Me“ by CSL Behring
When? On October 19, 2020, from 6:00 PM to 7:15 PM
Topics?
- Prof. F. Herth, Heidelberg: Alpha1-Antitrypsin Deficiency Therapy and Important Aspects of the Disease Course
- Dipl. Psych. P. Köbler, Nuremberg: Daily Strategies for Your Emotional Health
- Prof. R. Koczulla, Marburg/Schönau: Pulmonary rehabilitation in A1 antitrypsin deficiency: scientific evidence and practical significance
Participation? Digitally via StreamedUp! – you will find the registration link in due timeon the event page of Alpha1 Germany.
