We, a research team from the Neurological University Hospital Ulm (Medical Director: Prof Albert Ludolph) and the Institute of Epidemiology and Medical Biometry at Ulm University (Director: Prof Dietrich Rothenbacher), are currently conducting a study on amyotrophic lateral sclerosis (ALS) funded by the German Research Foundation. ALS is the third most common, chronically progressive neurological disease after Alzheimer's and Parkinson's disease. Those affected, including well-known personalities such as the Physics Professor Dr Stephen Hawking and the artist Professor Jörg Immendorff, gradually lose muscle strength and are no longer able to cope with everyday life on their own. The disease is incurable and usually ends in death after a few years. As we know very little about the causes of ALS to date, no targeted therapeutic measures are known.
The aim of the study is to establish the first epidemiologically defined register for ALS patients in Germany and to research the risk factors of ALS in a case-control study.
Epidemiological ALS register
Epidemiological (population-based) ALS registers collect, store and analyse data on the occurrence and frequency of ALS diseases in a spatially defined area (e.g. Swabia).
The data from epidemiological registers are the basis for particulars of the incidence of ALS. To date, there is no data on the incidence of new cases of ALS in Germany. We want to close this gap with our study. Based on surveys from other countries, it is estimated that around 2-3 people per 100,000 inhabitants are newly diagnosed with ALS each year.
The data from epidemiological registers make it possible to track the development of the new disease rate and to analyse the survival time. The highest possible level of coverage is a prerequisite for an undistorted representation of the disease in the population. We therefore ask ALS patients and their treating physicians to participate in the registry and to support this project as best they can.
Case-control study
In addition to describing the incidence of the disease in the population, we use the register data to investigate the causes of ALS in a case-control study. As part of the case-control study, two control persons from the Swabian region are considered for each ALS case stored in the register in order to identify differences in behaviour and lifestyle factors associated with ALS.
Comparison persons for this study are randomly selected from the resident population in the region according to scientific aspects. Therefore, we kindly ask all randomly selected persons to participate in the study so that the causes of this disease can be researched. Participation is voluntary and can be cancelled at any time.
As part of the survey, information on chronic diseases, medication, care, quality of life and selected lifestyle factors, e.g. smoking and exercise, will be collected in order to identify possible factors influencing the development of ALS.
Frontotemporal lobar degeneration (FTLD) comprises progressive neurodegenerative diseases that affect the frontal and temporal lobes of the brain. FTLD leads to personality changes, speech difficulties and behavioural problems. It is the second most common dementia in people under 65.
There are clear notes of a connection between ALS and FTLD, with FTLD patients more frequently developing ALS and vice versa. FTLD in ALS patients has a negative effect on the prognosis. In addition, FTLD in ALS patients is often recognised late due to motor impairments and speech disorders.
We have therefore also been recording FTLD cases in the study area since mid-2014. We hope to gain an insight into common pathomechanisms and identify risk factors.
Head of Office and management of the registry and the associated case-control study are shared between the Department of Neurology and the Institute of Epidemiology and Medical Biometry.
Project team at the Department of Neurology:
Prof Albert Ludolph, Dr Angela Rosenbohm, Prof Markus Otto, Dr Dorothée Lulé, Prof Jochen Weishaupt, Dr Patrick Weydt, Ilonka Kraft-Oberbeck, Nicola Lämmle, Ines Dobias
Project team at the Institute of Epidemiology and Medical Biometry:
Prof Gabriele Nagel, Prof Dietrich Rothenbacher, Raphael Peter, Sarah Enderle, Gertrud Feike, Birgit Och
Co-operation partner
More than 40 cooperating neurological clinics and other recruitment partners in Swabia are involved in this project. This ensures that the register is as complete as possible.
We are supported by the following neurological clinics in the Swabia region (and their chief physicians):
- PD Dr Arnold G., Klinikum Sindelfingen-Boeblingen, Department of Neurology
- Dr Baier H., ZFP Suedwuerttemberg, Department of Epileptology
- Prof. Dr Baezner H., Buergerhospital Stuttgart, Department of Neurology
- Dr Beattie J., Ostalb-Klinikum Aalen, Department of Neurology
- Dr Behne F., ZFP Suedwuerttemberg, Department of Epileptology
- PD Dr Bengel D., Oberschwabenklinik Ravensburg, Department of Neurology
- Dr med. Boertlein A., Buergerhospital Stuttgart, Department of Neurology
- Dr med. Bracknies, V., Department of Neurology, Dietenbronn
- Dr Burkhard, A., Klinikum Günzburg, Department of Neurology
- Dr med. Dempewolf, S., Department of Neurology, Ludwigsburg
- Prof. Dr Dettmers C., Schmieder Kliniken Konstanz
- PD Dr Freund, W., Praxis Biberach
- Dr Gold H.-J., Klinikum am Gesundbrunnen Heilbronn, Department of Neurology
- Prof. Dr med. Dr h.c. Dipl. Psych. Hacke, W., University of Heidelberg, Department of Neurology
- PD Dr Hecht M., Bezirkskrankenhaus Kaufbeuren, Department of Neurology
- Dr med. Heimbach B., University of Freiburg, Department of Neurology
- Dr Hendrich C., Klinikum Friedrichshafen, Department of Neurology
- PD Dr Herting B., Diakonie-Klinikum Schwaebisch Hall, Department of Neurology
- PD Dr Huber R., Klinikum Friedrichshafen, Department of Neurology
- Prof. Dr med. Huelser P.-J., Fachklinik Wangen, Department of Neurology
- Dr Kaendler S., Kliniken Landkreis Heidenheim, Department of Neurology
- Dr Kaspar A., Oberschwabenklinik Ravensburg, Department of Neurology
- Prof. Dr Kimmig H., Kliniken Schwenningen, Department of Neurology
- Priv.-Doz. Dr Klebe, S., University of Würzburg, Department of Neurology
- Prof. Dr Kloetzsch C., Schmieder Kliniken Allensbach, Bodensee Klinikum
- Prof. Dr Kloppstock, T., LMU Munich, Department of Neurology
- Dr Kohler, A., Klinikum am Gesundbrunnen Heilbronn, Department of Neurology
- Dr Lewis D., MD, Kliniken Schwenningen, Department of Neulology
- PD Dr med. Lichy C., Klinikum Memmingen, Department of Neurology
- Prof. Dr Lindner A., Marienhospital Stuttgart, Department of Neurology
- Prof. Dr Mauch E., Department of Neurology, Dietenbronn
- PD Dr Maeurer M., Caritas Hospital, Bad Mergentheim, Department of Neurology
- Prof. emeritus Dr Meinck H. M., University of Heidelberg, Department of Neurology
- Dr Meudt O., Klinikum Memmingen, Department of Neurology
- Dr Meyer A., Weissenau, Department of Neurology
- Dr Mueller vom Hagen J., Universitaetsklinikum Tuebingen, Department of Neurology
- Dr Naegele A., Christophsbad Goeppingen, Department of Neurology
- Prof. Dr Naumann M., Klinikum Augsburg, Department of Neurology and Neurophysiology
- Dr Neher K.-D., Vinzenz von Paul Hospital, Rottweil, Department of Neurology
- PD Dr Neuhaus O., Kliniken Landkreis Sigmaringen, Department of Neurology
- PD Dr med. Neusch C., Praxis EMSA Singen
- PD Dr Niehaus L., Department of Neurology, Winnenden
- Dr Peters J., Ostalb-Klinikum Aalen, Department of Neurology
- Dr Raape J., ZFP Suedwuerttemberg, Neurology Weissenau
- Dr Ratzka P., MD, Klinikum Augsburg, Department of Neurology and Neurophysiology
- Dr med. Reeh A., Kliniken Landkreis Heidenheim, Department of Neurology
- Dr med. Rettenmayr C., Klinikum Esslingen, Department of Neurology
- Dr Rothmeier J., ZFP Suedwuerttemberg, Neurologie Weissenau
- Dr Sabolek M., Department of Neurology, Biberach
- Prof. Schabet M., Department of Neurology, Ludwigsburg
- Dr Schaeff-Vogelsang M., Diakonie-Klinikum Schwaebisch Hall, Department of Neurology
- Prof. Dr Schoels L., University Hospital Tuebingen, Department of Neurology
- Dr Schweigert B., Caritas Hospital, Bad Mergentheim, Department of Neurology
- Prof. Dr Sommer N., Christophsbad Goeppingen, Department of Neurology
- Dr Sperber W., Kliniken Esslingen, Department of Neurology
- Dr Stroick M., Klinikum Memmingen, Department of Neurology
- Dr med. Trottenberg T., Department of Neurology, Winnenden
- PD Dr Weber F., Bundeswehrkrankenhaus BWK (military hospital) Ulm, Department of Neurology
- Dr Weihrauch M., Bundeswehrkrankenhaus BWK (military hospital), Department of Neurology
- Dr Weiler M., University of Heidelberg, Department of Neuology
- Priv.-Doz. Dr Wessig C., University of Wuerzburg, Department of Neurology
- Prof. Dr Widder B., Klinikum Guenzburg, Department of Neurology
- Dr med. Will H.-G., Kliniken Schwenningen, Department of Neurology
- PD Dr Dr Winkler A., TU Munich, Department of Neurology
- PD Dr med. Kern, Klinikum Kempten, Department of Neurology
- Dr med. Andres, Kreiskliniken Reutlingen, Department of Neurology
Publications in scientific journals
| 2020 | Schumacher J, Peter RS, Nagel G, Rothenbacher D, Rosenbohm A, Ludolph AC, Dorst J; ALS Registry Swabia Study Group. Statins, diabetes mellitus and prognosis of amyotrophic lateral sclerosis: data from 501 patients of a population-based registry in southwest Germany. Eur J Neurol. 2020 Aug;27(8):1405-1414. doi: 10.1111/ene.14300. | ||
Nagel G, Peter RS, Rosenbohm A, Koenig W, Dupuis L, Rothenbacher D, Ludolph AC. Association of Insulin-like Growth Factor 1 Concentrations with Risk for and Prognosis of Amyotrophic Lateral Sclerosis - Results from the ALS Registry Swabia. Sci Rep. 2020 Jan 20;10(1):736. doi: 10.1038/s41598-020-57744-x. | |||
| 2018 | Rosenbohm A, Nagel G, Peter RS, Brehme T, Koenig W, Dupuis L, Rothenbacher D, Ludolph AC; ALS Registry Study Group. Association of Serum Retinol-Binding Protein 4 Concentration With Risk for and Prognosis of Amyotrophic Lateral Sclerosis. JAMA Neurol. 2018 May 1;75:600-607. | ||
| Rosenbohm A, Liu M, Nagel G, Peter RS, Cui B, Li X, Kassubek J, Rothenbacher D, Lulé D, Cui L, Ludolph AC; ALS Registry Swabia Study Group. Phenotypic differences of amyotrophic lateral sclerosis (ALS) in China and Germany. J Neurol. 2018 Apr;265:774-782. | |||
| 2017 | Gorges M, Vercruysse P, Müller HP, Huppertz HJ, Rosenbohm A, Nagel G, Weydt P, Petersén Å, Ludolph AC, Kassubek J, Dupuis L. Hypothalamic atrophy is related to body mass index and age at onset in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2017 Dec;88:1033-1041. | ||
| Peter RS, Rosenbohm A, Dupuis L, Brehme T, Kassubek J, Rothenbacher D, Nagel G, Ludolph AC. Life course body mass index and risk and prognosis of amyotrophic lateral sclerosis: results from the ALS registry Swabia. Eur J Epidemiol. 2017 Oct;32:901-908. | |||
| Wais V, Rosenbohm A, Petri S, Kollewe K, Hermann A, Storch A, Hanisch F, Zierz S, Nagel G, Kassubek J, Weydt P, Brettschneider J, Weishaupt JH, Ludolph AC, Dorst J. The concept and diagnostic criteria of primary lateral sclerosis. Acta Neurol Scand. 2017 Sep;136:204-211. | |||
| Nagel G, Peter RS, Rosenbohm A, Koenig W, Dupuis L, Rothenbacher D, Ludolph AC. Adipokines, C-reactive protein and Amyotrophic Lateral Sclerosis - results from a population- based ALS registry in Germany. Sci Rep. 2017 Jun 29;7:4374. | |||
| Rosenbohm A, Peter RS, Erhardt S, Lulé D, Rothenbacher D, Ludolph AC, Nagel G; ALS Registry Study Group. Epidemiology of amyotrophic lateral sclerosis in Southern Germany. J Neurol. 2017 Apr;264:749-757. | |||
| 2014 | Uenal H, Rosenbohm A, Kufeldt J, Weydt P, Goder K, Ludolph A et al. Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia. PloS One. 2014; 9: e93932. | ||
| 2013 | Rosenbohm A, Kassubek J, Weydt P, Marroquin N, Volk AE, Kubisch C et al. Can lesions to the motor cortex induce amyotrophic lateral sclerosis? J Neurol. 2014; 261: 283-290. | ||
| Nagel G, Unal H, Rosenbohm A, Ludolph AC, Rothenbacher D, ALS Registry Study Group. Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS)--registry Swabia. BMC Neurol. 2013; 13: 22. | |||
| 2012 | Nagel G, Rosenbohm A, Ünal H, Rothenbacher D, Ludolph A, for the ALS Registry Study Group. Possibilities of registry-based studies for research into rare diseases. Current Neurol. 2012; 39: 12-17. |
Further contributions
| 2017 | Body Mass Index in Amyotrophic Lateral Sclerosis - Results from the ALS Registry Swabia. Nagel G, Peter RS, Rosenbohm A, Kassubek J, Rothenbacher D, Ludolph AC. Joint Annual Meeting of the DGEpi, the DGSMP and the DGMS. Lübeck. | |
| Body Mass Index and Diabetes Mellitus in Amyotrophic Lateral Sclerosis - Results from the ALS Registry Swabia. Rosenbohm A, Peter RS, Kraft I, Laemmle N, Dobias I, Rothenbacher D, Kassubek J, Nagel G, Ludolph AC and the ALS Register Swabia Study Group. Annual Meeting of the German Neurological Society. Leipzig. | ||
| Progressive muscular atrophy shows an alteration of corticoefferent tract systems: a diffusion tensor MRI study. Kassubek J, Rosenbohm A, C. Ludolph AC, Müller HP. 23rd Congress of the Scientific Advisory Board of the German Muscular Dystrophy Society in Munich. | ||
| 2016 | Adipokines, C-reactive protein and Amyotrophic Lateral Sclerosis - results from a population- based ALS registry in Germany Peter RS, Nagel G, Rosenbohm A, Koenig W, Dupuis L, Rothenbacher D, Ludolph AC and the ALS Registry Study Group Presentation at Real world data Workshop in Berlin, Germany. | |
| Clinical comparison of FTLD and ALS-FTLD patients - is there a difference? Angela Rosenbohm A, Peter RS, Otto M, Semler E, Nagel G, Rothenbacher D, Ludolph AC, Poster presentation at the ICFTD in Munich, Germany. | ||
| Amyotrophic lateral sclerosis in an aging society - expectations for future trends in Southern Germany. Rosenbohm A, Nagel G, Peter R, Rothenbacher D, Ludolph AC Presentation at the Annual Meeting of the German Neurological Society in Mannheim, Germany. | ||
| Amyotrophic Lateral Sclerosis in China and the Western World. Rosenbohm A. 89th Congress of the DGN Mannheim. | ||
| Slim and athletic - a risk factor for amyotrophic lateral sclerosis? Rosenbohm A. 89th Congress of the DGN Mannheim. | ||
| 2015 | Epidemiology and Medical Supply of FTLD in Southern Germany. Rosenbohm A, Peter RS, Rothenbacher D, Nagel G, Ludolph AC. The ALS-FTLD-Register Swabia. Annual Meeting of the German Society for Psychiatry and Psychotherapy in Berlin. | |
| Time and geographical patterns of amyotrophic lateral sclerosis incidence in the ALS Register Swabia. Nagel G, Peter RS, Erhardt S, Rothenbacher D, Rosenbohm A, Ludolph AC. November 2015 Fifth International Neurology and Epidemiology Conference in Gold Coast, Australia. | ||
| Comparative phenotypical differences of amyotrophic lateral sclerosis (ALS) in Germany and China. Rosenbohm A, Liu MS, Nagel G, Cui B, Li X, Fan D, Huang X, Rothenbacher D, Cui L, Ludolph AC. November 2015 World Congress of Neurology in Santiago de Chile, Chile. | ||
| Article on the expansion of the ALS registry to include FTLD in the Ärzteblatt Baden-Württemberg | ||
| Differences in phenotype and genetics of amyotrophic lateral sclerosis (ALS) in Germany and China. Rosenbohm A, Liu M, Nagel G, Rothenbacher D, Andersen PM, Weishaupt J, Cui L, Ludolph AC, ALS Register Schwaben & Chinese ALS Association. 22nd Congress of the Scientific Advisory Board of the German Association for Muscular Dystrophy, Bochum. | ||
| Physical activity and risk of amyotrophic lateral sclerosis: First results from a case-control study from the ALS Register Swabia. October 2015. Peter RS, Hegele L, Rosenbohm A, Rothenbacher D, Ludolph AC, Nagel G. Annual Meeting of the German Society for Epidemiology in Potsdam. | ||
| Time and geographical patterns of amyotrophic lateral sclerosis incidence in the ALS Register Swabia. Peter R, Erhardt S, Rosenbohm A, Rothenbacher D, Ludolph AC, Nagel G. October 2015. Annual Meeting of the German Society for Epidemiology in Potsdam. | ||
| Time and geographical patterns of amyotrophic lateral sclerosis incidence in the ALS Register Swabia. Rosenbohm A, Peter R, Erhardt S, Kraft I, Laemmle N, Dobias I, Rothenbacher D, Nagel G, Ludolph AC. September 2015. annual meeting of the German Society of Neurology in Düsseldorf. | ||
| 2014 | Life-style associated risk factors of amyotrophic lateral sclerosis - First results from a case-control study conducted in the ALS Register Swabia. Rosenbohm A, Ludolph. AC, Ünal H, Rothenbacher D, Nagel G and the ALS Register Swabia Study Group. ENCALS 2014 Leuven, Belgium. | |
| Morbidity associated with amyotrophic lateral sclerosis - First results from a case-control study conducted in the ALS Register Swabia Rosenbohm A, Ünal H, Ludolph AC, Rothenbacher D, Nagel G and the ALS Register Swabia Study Group . Conference of the German Society of Neurology in Munich. | ||
| Life-time history of injuries, morbidity and risk of amyotrophic lateral sclerosis - First results from a case-control study conducted in the ALS Register Swabia Nagel G, Ünal H, Rothenbacher D , Ludolph AC, Rosenbohm A and the ALS Register Swabia Study Group. 9th Annual Meeting of the German Society for Epidemiology in Ulm, Germany. | ||
| 2013 | The ALS Register Swabia - Epidemiology and Risk Factors of ALS in Southern Germany Rosenbohm A, Ludolph AC, Ünal H, Rothenbacher D, Nagel G and the ALS Register Swabia Study Group. 24th International ALS/MND Symposium in Milan, Italy | |
| Uni Ulm Intern: Cell-damaging protein could explain link between ALS and FTLD | ||
| Life-style associated risk factors of amyotrophic lateral sclerosis - First results from a case-control study conducted in the ALS Register Swabia. Rosenbohm A, Ludolph AC, Ünal H, Rothenbacher D, Nagel G and the ALS Register Swabia Study Group 86th Annual Congress of the German Neurological Society in Dresden; Germany. | ||
| Life-style associated risk factors of amyotrophic lateral sclerosis - First results from a case-control study conducted in the ALS Register Swabia. Ünal H, Rosenbohm A, Berry G, Ludolph AC, Rothenbacher D, Nagel G and the ALS Register Swabia Study Group. 8th Annual Meeting of the Society for Epidemiology in Leipzig. | ||
| The population-based ALS register Swabia: Presentation of initial results, Rosenbohm A, Kraft-Oberbeck I, Lämmle N, Nagel G, Uenal H, Berry G, Rothenbacher D, Ludolph AC. 21st Congress of the scientific advisory board of the German Society for Muscle Diseases in Aachen. | ||
| Uni Ulm Intern: Metabolic factor influences ALS progression in men | ||
| Ulm University Internal: Two new research centres for the study of ALS and FTLD | ||
| 2012 | Spatial clusters of amyotrophic lateral sclerosis: Results from the population-based ALS register Swabia, Uenal H, Rosenbohm A, Berry G, Kufeldt J, Ludolph A, Rothenbacher D, Nagel G German Society for Epidemiology in Regensburg. (awarded with the poster prize of the DGEpi) | |
| The ALS Register Swabia: epidemiology and risk factors in southern Germany (Poster) Rosenbohm A, Rothenbacher D, Nagel G, Ludolph AC. 10th annual ENCALS meeting 2012 in Dublin, Ireland. | ||
| The ALS Register Swabia - Epidemiology and Risk Factors of ALS in Southern Germany. Weydt P, Rosenbohm A, Ludolph AC, Ünal H, Rothenbacher D, Nagel G, and the ALS Register Swabia Study Group. Rare Disease and Orphan Drug Registries International Workshop 2012 in Rome, Italy. | ||
| Spatial clusters of amyotrophic lateral sclerosis: results from the population-based ALS register Swabia. Rosenbohm A, Kraft-Oberbeck I, Lämmle N, Uenal H, Berry G, D. Rothenbacher D, Nagel G, Ludolph AC 85th Congress of the German Neurological Society 2012 in Hamburg, Germany. | ||
| The 2nd China ALS International Conference & World Federation of Neurology Research Group teaching course on Motor Neuron Disease and Frontal Temporal Degeneration. Rosenbohm A, Beijing; China. | ||
| The international ALS register Swabia in southern Germany. Rosenbohm A, Ulaanbaatar ("Actual problems in motor neuron diseases and cognitive disorders", International teaching workshop, June 25-26th, 2012 Ulaanbaatar, Mongolia). | ||
| The ALS Register Swabia - Epidemiology and Risk Factors of ALS in Southern Germany. Nagel G The 2nd International Congress on Neurology and Neuroepidemiology. Nice, France. | ||
| 2011 | The population-based ALS register Swabia: Presentation of the design and methodological structure. Rosenbohm A, Kraft-Oberbeck I, Maier M, Nagel G, Rothenbacher D, Ludolph AC, 84th Congress of the German Neurological Society 2011 in Wiesbaden, Germany. | |
| Announcement of the ALS Register Swabia in the Ärzteblatt Baden-Württemberg |
Contact us
Liaison office of the ALS Register
Phone: 0173 - 346 2159
Email: als-ftld-register(at)uni-ulm.de
Funded by the German Research Foundation
