Online seminar with Dr. Timm Greulich:
Alpha-1 antitrypsin deficiency: General, new and rare aspects
Author
Alpha1 Germany eV.
On May 24, 2020, our online seminar "Alpha-1 Antitrypsin Deficiency: General, New, and Rare Aspects" with Dr. Timm Greulich (MD, PhD) premiered on YouTube. Couldn't make it to the premiere? No problem – you can watch the entire video anytime on our YouTube channel or further down on this page.
Speaker: Dr. Timm Greulich (MD, PhD), Philipps University of Marburg, PneumoPraxis Marburg, scientific advisory board at Alpha1 Germany eV.
To the online seminar: In his presentation, our guest speaker, Dr. Timm Greulich, addresses the current state of scientific knowledge regarding alpha-1 antitrypsin deficiency. Specifically, he explores the following questions in four chapters:
- What is alpha-1 antitrypsin deficiency?
- How dangerous is the disease?
- How is the disease treated?
- What's new in research and science?
Watch the online seminar now:
Answering participants' questions
In which countries is the SPARTA study taking place? Can participants still register for the study – if so, where?
Dr. Timm Greulich: The SPARTA study is being conducted exclusively in countries where substitution therapy is not reimbursed by health insurance. Only there is it possible to include patients in a study that incorporates a placebo arm over a long period. Therefore, it is not being conducted in Germany.
Can the new cheek swab tests be ordered through a general practitioner? Is the test subject to a fee? Can this testing method also be used to test for other medically relevant conditions – for example, Covid-19?
Dr. Timm Greulich: According to current information, cheek swabs will not be available in Germany until 2021. While their use for other relevant indications is conceivable, it is not currently planned. The SARS-CoV-2 swab is taken further back in the throat. While cheek swabs for genetic diagnostics require cells with sufficient DNA (obtained from the buccal mucosa), a SARS-CoV-2 swab requires cells from the back of the throat that are infected with the virus.
Are the findings from the German Alpha1 Register automatically incorporated into the European Register, or is separate registration required?
Dr. Timm Greulich: You can choose. If you put a corresponding checkmark on the consent form (and only then), the German registry can access it.
Is there a study that shows how much lung density is lost in healthy people, i.e., in "non-alphas"? Or: Does lung density decrease as quickly in healthy people as in treated alphas?
Dr. Timm Greulich: Unfortunately, we don't know that. We only know that with substituted alphas, the loss of lung density is mitigated, to approximately the same "rate" as found in "normal COPD".
