Author
Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 1/2022.
After much advance announcement about how important EARCO is, we have finally reached a milestone: Germany has enrolled its first patients in the European registry.
The Thorax Clinic in Heidelberg, under the direction of senior physician Dr. Franziska Trudzinski, has taken over the coordination of registry entries in the EARCO registry with the support of Dr. Timm Greulich (Marburg) and has already entered the first patient data. Further centers in Germany will follow and have already applied for accreditation.
What does this mean for me as a patient? I will undergo even more thorough examinations, as a large amount of data is collected for the registry. Since data collection must also be carried out regularly, I will receive an annual appointment. These annual checkups allow my doctor and me to detect any deterioration in my health as early as possible. This gives me the opportunity to better manage the illness through increased knowledge.
Why is such a register generally so important?
We want to understand why the course of the disease varies so much. Why, for example, do some affected individuals never become ill despite severe deficiency? Which comorbidities influence the severity of the disease? What has a positive effect on its course? To find out about such things, we need valid (good) data, ideally covering a longer period – and that's what the European registry is for.
Join in and actively ask your doctor about EARCO!
