Prof. Dr. med. Albert C. Ludolph (Ulm / DE), PD Dr. Angela Rosenbohm (Ulm / DE), Deborah Kurz (Ulm / DE), Raphael S. Peter (Ulm / DE), Leo Strican (München / DE), Ulrike Sager (München / DE), Colin Wernsdörfer (München / DE), Dr. Joachim Schuster (Ulm / DE), Dietrich Rothenbacher (Ulm / DE), Gabriele Nagel (Ulm / DE)
Abstract-Text (inkl. Referenzen)
Introduction:
The ALS registry Swabia is an epidemiologic registry in Southern Germany covering a source population of 8.4 million inhabitants. The registry has high coverage rate of 82% and evaluates data on annual follow up visits. We describe natural history and evaluation of (non)-invasive ventilation and clinical milestones in the times of 2015 to 2022.
Methods:
More than 2000 ALS patients are included in the ALS registry. Around 65% have given consent to annual follow up by study nurse visits and provide patient related outcome measures as well as biomarkers.
Results:
The collected data (e. g. patient characteristics, rates of therapy discontinuation, noninvasive ventilation, tracheostomy, medication) allows a thorough comparison of this German patient population to other study groups for sufficient comparability. The registry Swabia constitutes a highly valid and reliable data source, as data is being recorded by trained study nurses following long-established procedures that ensure high consistency and low variability.
By showing the real world therapeutic landscape, not all patients are actually treated with riluzole or nonivasive ventilation at all times. Therapy is based on physician"s and patient`s choice. Noninvasive ventilation is used quite often, whereas tracheostoy is a rare choice.
Summary:
The collection of data show the burden of patients with ALS and may also support arguments relating to the economic impact of ALS on German health care resources.