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Our outpatient clinics and centers

The special outpatient clinics in our network have many years of experience in the treatment of motor neuron diseases and are distributed throughout Germany. To learn more about an outpatient clinic near you, click on the corresponding point on the map.

Please select a location on the map.

University Hospital RWTH Aachen

Institute for Neuropathology

Every year, the Institute receives more than 1,500 submissions of muscle, nerve and skin biopsies from the University Hospital RWTH Aachen as well as from numerous university and non-university cooperation partners from Germany and neighbouring countries. We use these biopsies to diagnose muscle and nerve diseases with histological, immunohistochemical and molecular pathological methods. Skin biopsies are examined for special diseases of the small skin nerve fibres (small fibre neuropathy). A special focus of the institute is electron microscopy, which we perform on about 200 cases of neuromuscular diseases per year. J. Weis is head of the Reference Centre for Neuromuscular Diseases at the German Society for Neuropathology and Neuroanatomy (DGNN) and in this capacity examines muscle and nerve biopsies as a consultant.

The institute focuses on research into the pathology of neuromuscular and neurodegenerative diseases, including ALS. We combine studies on biopsy and autopsy tissue with studies on animal and cell culture models. Our projects are supported by the German Research Foundation (DFG) and the Federal Ministry of Health (BMG), among others. The Institute is involved in the networks “MND-Net”, “MD-Net”, “Myositis Netz” and “CMT-Net”.

Neuromuscular Outpatient Clinic

The Neuromuscular Outpatient Clinic of the Department of Neurology at the University Hospital Aachen is responsible for the outpatient university care of patients with neuromuscular diseases in the region, including motor neurone disease. The team of doctors (Dr. Gausmann, Dr. Dohrn, PD Dr. Brunkhorst) is committed to the comprehensive diagnosis and treatment of patients suffering from motor neurone disease.

The clinical expertise is based on many years of experience in clinical and electrophysiological diagnostics and the very good in-house cooperation with clinical-theoretical institutes with a diagnostic focus on neuromuscular diseases (Institute of Neuropathology, Prof. Weis and Institute of Human Genetics, Prof. Kurth). Through cooperation with the other clinics of the MND-Net, current research results should benefit patients with motor neurone diseases. In addition, there are clinical cooperations within the Neuromuscular Centre North Rhine and the European Network for Rare Diseases (ERN-NMD).

Dr Brunkhorst’s scientific focus is on basic research (sphingolipidoma in ALS patients, cellular mechanisms of regeneration). Dr. Dohrn and her research group, on the other hand, focus on two main areas of research: The discovery of new disease genes in the context of rare neuromuscular diseases and motor neuron diseases and the establishment of gene-disease relationships. As a second focus, Dr. Dohrn’s research group is establishing new disease early detection and progression markers in preparation for clinical trials (trial readiness).

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Location

University Hospital Aachen
Pauwelsstraße 30
52074 Aachen

Kontakt

Institute for Neuropathology


Director: Univ.-Prof. Dr. med. J. Weis
Senior Physician, Deputy Director:
Jun.-Prof. Dr. med. Dr. sc. nat. J. Bremer
Consultant: Dr. I. Katona
Assistant doctors: K. Nolte, S. Nikolin

phone: +49 241 / 808 94 28
fax: +49 241 / 808 24 16

Website:
Institut für Neuropathologie der UK Aachen

Neuromuscular Outpatient Clinic


PD Dr. med. Robert Brunkhorst
University of Aachen, Special Outpatient Clinic
for neuromuscular diseases

phone: +49 241 / 808 51 28
fax: +49 241 / 80 33 88 410

Website:
Neuromuskuläres Zentrum der UK Aachen

Charité – University Medicine Berlin

The ALS Outpatient Clinic of the Charité has been in existence since 2002 and is one of the leading treatment and study centres for people with ALS in Germany. More than 700 patients receive specialised treatment at the Charité – by a dedicated ALS team of 5 neurologists as well as “ALS nurses”, study assistants and care coordinators.

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The outpatient clinic focuses on the following areas:

  • Individual diagnosis (variants and courses of ALS)
  • Prognostic assessment and care planning
  • Biomarker measurement “Neurofilament light chain” (NfL)
  • Treatment in clinical trials and early access programmes
  • Participation in research projects and genetic screening
  • Drug supply, therapeutic aids and remedies and assistive technology
  • Nutrition, respiratory and cough aids
  • Transfer to the “Ambulanzpartner” care network
  • Telemedical research & care coordination via “ALS app”

Images: © Charité Berlin

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Location

Charité – University Medicine Berlin,
Campus Virchow Clinic
Neurological Polyclinic
Outpatient clinic for ALS and other Motoneuron Diseases
Augustenburger Square
13353 Berlin

Head of the ALS outpatient clinic:
Prof. Dr. Thomas Meyer

Head of clinical trials:
Dr. André Maier

Kontakt

Phone: +49 30 / 450 560 028

Appointment requests:

Information on consultation hours:
als-charite.de/ambulanzbesuch

Information on studies:
als-charite.de/aktuelle-studien

Website:
www.als-charite.de

University Hospital Bergmannsheil Bochum

In our motor neuron outpatient clinic, patients with amyotrophic lateral sclerosis, spinal muscular atrophy and hereditary spastic spinal paralysis are cared for. In addition to the clinical examination and the monitoring of the respiratory and swallowing function by determining the vital capacity and the coughing impulse as well as the fibre-endoscopic evaluation of the swallowing act, we also organise the prescriptions for remedies and aids for our patients.

In cooperation with the Charite, we carry out biomarker studies and molecular genetic tests as well as health care research.

We participate in multicentre randomised therapy studies.

In addition, we offer ALS patients with molecularly genetically confirmed SOD-1 mutation intrathecal Tofersen therapy in an outpatient setting via our infusion outpatient clinic.

Adult patients with spinal muscular atrophy are treated intrathecally with nusinersen or orally with risdiplam; inclusion in the SMArtCARE patient register is offered.

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Location

Professional association
University Hospital Bergmannsheil GmbH
Bürkle-de-la-Camp-Platz 1
44789 Bochum

Kontakt

Dr. Ute Weyen
Senior Senior Consultant

Head of the ALS Outpatient Clinic
Neurological Clinic and Polyclinic
phone: +49 234 / 302 69 12

Professor Dr. Matthias Vorgerd
Chief Senior Consultant

Neurological Clinic and Polyclinic
phone: +49 234 / 302 68 08

Marius Bender
secretary’s office
Neurological Polyclinic
phone: +49 234 / 302 68 12

Website:
Neurologie des UK Bergmannsheil Bochum

ALS Outpatient Clinic Bonn

Our outpatient clinic is the contact point for patients with ALS, SMA, SBMA and other motor neuron diseases at the University Hospital Bonn. A multidisciplinary team consisting of two medical specialists, an ALS pilot and a psychologist as well as several student assistants are dedicated to the diagnosis, treatment and research of these serious diseases. We currently accompany more than 250 ALS patients and, in addition to outpatient care, offer the possibility of inpatient admissions, PEG placement, NIV adjustment, swallowing diagnostics, as well as genetic counselling and participation in observation and therapy studies.

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Location

ALS Outpatient Clinic
Clinic for Neurodegenerative Diseases and Gerontopsychiatry
Venusberg Campus 1
53127 Bonn

Kontakt

Head:
PD. Dr. med. Patrick Weydt

phone: +49 228 / 287 13 775 (secretary’s office)

Website:
www.ukbonn.org

University Hospital Carl Gustav Carus Dresden

The University Outpatient Clinic for Motor Neurone Diseases at the University Hospital Carl Gustav Carus Dresden deals with the clinical pictures of amyotrophic lateral sclerosis and its variants, spinal muscular atrophy, hereditary spastic spinal paralysis and other motor neurone diseases. We offer diagnostic classification (including electrophysiology, imaging procedures, lumbar puncture with biomarker analysis, etc.), second opinion and multidisciplinary therapy support for patients with motor neuron diseases. At our university hospital, we offer, among other things, the possibility of sleep laboratory diagnostics, the adjustment of invasive / non-invasive ventilation and the installation of a percutaneous, endoscopic gastrostomy. In addition to patient care, gaining scientific knowledge in the field of this group of rare diseases is important to us. Patients at our centre are therefore invited to participate in register studies, drug studies and other projects with scientifically target-oriented questions.

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Location

University Outpatient Clinic for Motor Neurone Diseases
of the University Hospital Carl Gustav Carus Dresden
Fetscherstraße 74
01307 Dresden

Kontakt

PD Dr. med. René Günther
phone: +49 351 / 458 25 32

Website:
https://www.als-dd.de

Erlangen University Hospital

The ALS outpatient clinic at the Erlangen University Hospital provides comprehensive multi-professional care for patients with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases such as primary lateral sclerosis (PLS), progressive muscular atrophy (PMA), progressive bulbar paralysis (PBA) and spinobulbar muscular atrophy (Kennedy):

Electrophysiology, cerebrospinal fluid analysis, imaging, respiratory diagnostics, swallowing diagnostics, nutritional counselling, genetic diagnostics and counselling, aid and remedy counselling, psychosocial counselling.

In addition, we also offer presentations to obtain a co-assessment or second opinion. In addition to clinical care, we offer participation in several clinical and translational studies, also embedded in the MND-Net.

We are also involved in the Centre for Rare Diseases Erlangen (ZSEER). From the scientific side, there is participation in clinical trials for rare movement diseases. In addition, patient-specific in vitro models are characterised in the Stem Cell Biology Department (Head: Prof. Dr. med. Beate Winner) with a focus on HSP and ALS.

Team der ALS-Ambulanz am UK Erlangen
Team der ALS-Ambulanz am UK Erlangen
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Location

Head Clinics
University Hospital Erlangen
Schwabachanlage 6
91054 Erlangen

Kontakt

PD Dr. med. Martin Regensburger
Head of the ALS Outpatient Clinic
phone: +49 9131 / 85 39324

Website:
https://www.molekulare-neurologie.uk-erlangen.de/

Essen University Hospital

The ALS outpatient clinic at Essen University Hospital offers patients with motor neurone disease the full outpatient and inpatient spectrum for the diagnosis and treatment of amyotrophic lateral sclerosis (ALS) and spinal muscular atrophy (SMA). In addition to a detailed clinical examination, electrophysiological measurements (neurography, myography, single-fibre EMG, evoked potentials), differentiated cerebrospinal fluid and laboratory diagnostics, genetic and neuropsychological examinations are used for diagnosis. Genetic counselling is also offered. In a multidisciplinary approach, the centre is also closely linked to other specialist disciplines and is also the point of contact with regard to the provision of remedies and aids as well as socio-medical and psychosocial aspects of the disease. Therapeutically, mainly genetic-based therapy methods are used, for which a comprehensive support programme exists. Further outpatient care is offered.

The scientific focus is on the investigation of clinical course parameters as well as biomarker investigations. Both clinical and basic scientific studies are carried out.

The centre is certified by the DGM as a neuromuscular centre (part of the MZ Nordrhein).

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Location

Centre for Neuromuscular Diseases
Clinic for Neurology
University Hospital Essen
Hufelandstraße 55
45147 Essen

Kontakt

Prof. Dr. med. T. Hagenacker
phone: +49 201 / 723 63 02

Website:
https://neurologie.uk-essen.de

Alfried Krupp Hospital, Essen Rüttenscheid

The ALS outpatient clinic at the Alfried Krupp Hospital in Essen Rüttenscheid offers consultation hours between 8:30 am and 4 pm from Monday to Thursday. In addition to making a diagnosis (including second opinions), its tasks include optimised care (medication, medical aids and appliances), palliative medical care and interdisciplinary treatment, particularly in close cooperation with the Clinic for Gastroenterology and Pneumology at the Alfried Krupp Hospital in Essen Steele. Fixed structures such as an inter-hospital database and an internet-based care structure (AmbulanzPartner) are available to ensure smooth care. Due to the number of patients undergoing treatment (about 350-400 patients/year) and due to the close networking with the other large ALS outpatient clinics nationwide, especially the ALS outpatient clinic of the Charité in Berlin, but also the neuropathology of the university clinics of the RWTH Aachen, many research projects are carried out and supported. The aim is to provide comprehensive care for patients and to offer all therapeutic options.

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Location

Alfried Krupp Hospital, Essen Rüttenscheid
Alfried-Krupp-Str. 21
45131 Essen

Kontakt

phone: +49 201 / 434 414 26

Website
ALS outpatient clinic of the Alfried Krupp Hospital

University Medical Centre Göttingen

As part of the certified Centre for Neuromuscular Diseases at the UMG, we treat patients with ALS and other motor neuron diseases. We carry out all the necessary diagnostics including electrophysiology, MRI, genetics, etc. during inpatient or outpatient stays. Presentations for second opinions are also welcome. We participate in drug and registry studies and actively conduct basic and clinical research ourselves to develop new therapeutic approaches. Patient care is usually long-term with regular outpatient presentations.

Head:
PD Dr. med. Jan Christoph Koch

Deputy Head:
Dr. med. Bettina Göricke

Study nurse:
Jennifer Stückrath

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Location

Special outpatient clinic for ALS and other motor neuron diseases
Department of Neurology
University Medical Centre Göttingen
Robert-Koch-Str. 40
37075 Göttingen

Kontakt

Appointments via Jennifer Stückrath:
phone: +49 551 / 39 63795

Website:
Motoneuron-Ambulanz der UM Göttingen

University Hospital Halle (Saale)

Since the 1990s, neuromuscular diseases have been a focus of the neurological University Hospital Halle (Saale) as a DGM-certified centre for muscular diseases, with full interdisciplinary diagnostics and many years of experience in the care of corresponding symptoms, for the best possible therapeutic care of affected patients.

For more than 10 years, the Halle University Neurology (Saale) has been involved in the MND Network Germany for 10 years in order to improve the care of patients with motor neurone disease (MND) and to (MND) and to open up new perspectives. In doing so, the University Neurology Halle (Saale) is a partner clinic in national and international studies and exchange of scientific cooperation in the field of neuromuscular diseases.

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Location

University Hospital Halle (Saale)
Neuro-Ambulanz
Ernst-Grube-Straße 40
06120 Halle (Saale)

Kontakt

Head physician Prof. Dr. M. Otto
Senior physician Dr. A. Mensch
Outpatient physician Dr. A. Posa
Outpatient physician Dr. C. Stapf

phone: +49 345 / 557 334 0

Website:
https://www.medizin.uni-halle.de/

Hannover Medical School

In the neuromuscular consultation/ ALS outpatient clinic of the Neurological Clinic of the Hannover Medical School, patients with neuromuscular diseases, in particular motor neurone diseases, from the entire northern German region are examined and cared for. When new patients are presented, outpatient diagnostics are first carried out and, if necessary, an inpatient stay is organised. In addition, further treatment and regular follow-up examinations are coordinated here to ensure long-term care. In addition to clinical assessment, extensive laboratory tests, genetic tests and modern imaging and neurophysiological procedures are available in laboratories with many years of experience with neuromuscular diseases to determine the diagnosis.

A major research focus of the ALS working group is the analysis of pathomechanisms and new therapeutic approaches of ALS by means of investigating various in vitro and mouse models. Clinical research content within the framework of national and international BMBF- and EU-funded networks includes electrophysiological analyses, the search for risk factors and prevention strategies of ALS, questions of health care research as well as clinical therapy studies.

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Location

MHH Hannover
Carl-Neuberg-Straße 1
30625 Hannover

Kontakt

Prof. Dr. med. Susanne Petri
phone: 0511 / 532 31 22

Website:
https://www.mhh.de

University Hospital Jena

At the Neuromuscular Centre of the University Hospital Jena, special consultation hours are offered for neuromuscular and motor neuron diseases. Furthermore, in addition to inpatient treatment, an interdisciplinary day-clinic setting is also available for initial diagnosis, therapy initiation or follow-up. Patients receive specific holistic therapy concepts including drug treatment, supportive measures and professional provision of medical aids and appliances (in cooperation with AmbulanzPartner) and socio-medical counselling as well as the opportunity to participate in therapy studies (e.g. for amyotrophic lateral sclerosis, myasthenia gravis). The placement of feeding tubes, including follow-up care in the neurological intensive care unit and transfer to care by a home feeding centre, polysomnography and initiation of non-invasive home ventilation, complete the inpatient treatment. Another focus is the planning and implementation of specialised gene therapies for patients with spinal muscular atrophy and a proven genetic defect.

Our research projects deal with the identification and evaluation of biomarkers in motor neuron diseases based on an extensive collection of biomaterials and clinical course observations. These include studies on the development of MRI surrogate parameters for disease progression in ALS, as well as analyses in skin biopsies from patients with motor neuron diseases on the significance of cytoskeletal remodelling of axons in relation to disease progression.

Approximately 700 patients with neuromuscular diseases are treated annually at the Neuromuscular Centre of the University Hospital Jena.

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Location

University Hospital Jena
Neuromuscular Centre
Am Klinikum 1
07747 Jena

Kontakt

Dr. Annekathrin Rödiger
phone: +49 3641 / 93 23 482

Dr. Robert Steinbach
phone: +49 3641 / 93 23 587

Website:
https://www.uniklinikum-jena.de

Helios MVZ Kassel

At the Helios MVZ Kassel, special consultation hours are offered for patients with neuromuscular diseases and motor neurone diseases. Care is provided jointly with the Clinic for Neurology and Clinical Neurophysiology at the Helios Clinic Kassel (head physician Dr. Godau). In addition to specific diagnostics (electromyography, electroneurography, cerebrospinal fluid diagnostics, molecular genetic diagnostics, MRI, neuropsychological diagnostics), patients receive a comprehensive range of therapies (drug treatment, counselling on aids and remedies in cooperation with occupational therapy, physiotherapy and speech therapy practices, as well as a neuropsychological practice). In cooperation with pulmonology (external) and gastroenterology, we also take care of the adjustment to NIV ventilation (if necessary also TC) and the installation of a PEG (percutaneous feeding tube). There is also the possibility of intensive medical care at our clinic.

In cooperation with the surrounding university hospital, we participate in individual research projects.

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Location

Helios MVZ Kassel
Department of Neurology
Bergmannstrasse 30
34121 Kassel

Kontakt

Dr. Clemens Eickhoff
phone: +49 561 / 3086-1000

Website:
Neurologie am Helios MVZ Kassel

University Hospital Leipzig

At the centre, patients with motor neurone disease are cared for and treated in a multidisciplinary manner (neurology, pulmonology, orthopaedics, gastroenterology).

The range of treatments is expanded by therapy studies.

From a scientific point of view, the centre is involved in the ALS network MND-NET (coordinated by the University Hospital in Ulm) and in the outpatient care network (cooperation with Prof. Dr. Meyer, outpatient clinic for ALS and other motor neuron diseases at the Charité Berlin). Recently, several patients were successfully recruited for the ROCK-ALS therapy study at the centre.

Dr. Dr. Metelmann is involved in molecular biological projects on the role of the protein TDP-43 in ALS (cooperation with PD Dr. Holzer, Paul Flechsig Institute, University of Leipzig) as well as clinical projects on pseudobulbar affect in ALS and on psychotherapeutic support for patients with ALS (cooperation with Prof. Dr. Mehnert-Theuerkauf, Department of Medical Psychology and Medical Sociology, University of Leipzig).

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Location

Clinic and Polyclinic for Neurology
University Hospital Leipzig
Liebigstraße 20
04103 Leipzig

Kontakt

Patient helpline: Eike Hänsel
phone: +49 341 / 97 24 366

Senior Physician PD Dr. med. Petra Baum
phone: +49 341 / 97 24 302
fax: +49 341 / 97 24 219

Dr. Dr. Moritz Metelmann
phone: +49 341 / 97 24 302
fax: +49 341 / 97 24 219

Website:
https://www.uniklinikum-leipzig.de/einrichtungen/neurologie

University Hospital Schleswig-Holstein Lübeck Campus

We offer comprehensive care for patients with neuromuscular diseases, muscle diseases and motor neuron diseases in children, adolescents and adults. The entire range of neurological, neurophysiological, neuropathological and human genetic examination techniques are available for outpatient, day clinic and inpatient diagnosis. The Clinic for Neurology has its own intensive care unit for crisis intervention and the application of nutritional aids, and in cooperation with the Clinic for Pulmonology, the adaptation and testing of home respiration.

We provide comprehensive advice to patients and relatives, as well as to physicians in private practice, on questions of diagnostics and therapy, the provision of medical aids and remedies, nutrition and nutritional aids, physiotherapeutic, occupational therapy and logopaedic care, home respiration, and, if required, on questions of palliative medical care and treatment in the advanced stages of severe illnesses.

We also offer a range of clinical trials testing new drugs to treat neuromuscular diseases, as well as scientific studies to help educate and monitor neuromuscular diseases. We are pleased to be available to our patients with neuromuscular diseases as a competent contact partner in the multitude of problems that arise. In doing so, we work closely with neuromuscular competence facilities throughout Schleswig-Holstein to ensure care close to home.

In 2022, we will have treated around 100 ALS patients in our outpatient day clinic, 50 patients will have been included in register studies, 17 in observation studies. For the coming year, we are planning to increase the number of patients to 200 to 250 with a proportionally higher number of study enrolments.

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Location

University Hospital Schleswig-Holstein Lübeck Campus
Clinic for Neurology
Neurological Day Clinic
Ratzeburger Allee 160
House D1
23538 Lübeck

Kontakt

Head:
Prof. Dr. med. Julian Großkreutz

Patient care
phone: +49 451 / 500 434 31
fax: +49 451 / 500 434 24

Scientific and clinical studies
phone: +49 451 / 500 434 68
fax: +49 451 / 500 434 24

Website:
https://www.uksh.de

University Hospital Mannheim/ University of Heidelberg

An internationally recognised focus of the Neurodegeneration Section of the University Hospital Mannheim/University of Heidelberg is on motor neuron diseases. Our team has many years of experience in the diagnosis and treatment of patients with motor neuron diseases, with a particular focus on familial or genetic forms. Our outpatient and inpatient services cover the entire diagnostic and therapeutic spectrum of motor neuron diseases.

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Within the framework of our special consultation hours or during an inpatient stay, we offer:

  • Initial diagnosis and second opinion in cases of suspected motor neurone disease
  • Specialised care in the case of an already confirmed diagnosis and support throughout the entire course of the disease
  • Stage-dependent evaluation of the need for aids, advice on aids and provision of aids together with specialised partners
  • Genetic counselling, initiation of human genetic diagnostics and discussion of findings in our neurogenetics consultation hour
  • Gene-specific therapy (Tofersen)
  • Nocturnal, non-invasive blood gas analysis if respiratory muscle weakness is suspected
  • Initiation of non-invasive home ventilation
  • Optimisation of existing non-invasive or invasive home mechanical ventilation
  • Establishment of a PEG feeding tube in cooperation with the department of gastroenterology
  • Socio-medical counselling Participation in biomarker, care and therapy studies
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Location

Mannheim University Medical Centre
University of Heidelberg
Theodor-Kutzer-Ufer 1 – 3
68167 Mannheim

Kontakt

Prof. Dr. med. Jochen Weishaupt
Section Neurodegeneration

(secretary’s office Ms Stanek, daily from 8:00 a.m. to 12:00 p.m.)
phone: +49 621 / 383-1771
fax: +49 621 / 383-8459

Website:
https://www.umm.uni-heidelberg.de/

Diako Mannheim

The special outpatient clinic for motor neuron diseases and ALS is part of the Department of Neurology and is headed by the head physician Priv.-Doz. Dr. Joachim Wolf. Approximately 110 ALS patients are cared for in this outpatient clinic. It is also used to obtain a neurological second opinion. The Department of Neurology offers the entire range of diagnostics for the detection of motor neurone disease/ALS. In addition, the necessary PEG tubes are inserted here to maintain nutrition and mask ventilation is adapted in the case of respiratory muscle weakness. The focus of the scientific work is epidemiological research. Among other things, the population-based ALS register Rhineland-Palatinate is managed. The Clinic for Neurology at the Diako Mannheim is part of the Neuromuscular Centre Rhine-Neckar. The head physician is the medical advisor of the ALS discussion group of the Rhine-Neckar metropolitan region.

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Location

Diako Mannheim
Clinic for Neurology
Special outpatient clinic for motor neurone diseases and ALS
Speyerer Straße 91-93
68163 Mannheim

Kontakt

Head:
Chief Physician Priv.-Doz. Dr. Joachim Wolf
phone: +49 621 / 810 235 01

Website:
Neurologie des Diako Mannheim

LMU Hospital Munich

We offer the entire diagnostic spectrum as well as multidisciplinary care at the University Medical Centre, including the initiation and monitoring of non-invasive and invasive forms of ventilation as well as psychosocial support and the provision of medical aids (in cooperation with the DGM, Bavarian regional association). Barrier-free access at both locations (Campus Innenstadt and Großhadern).

We conduct studies on the course of the disease, symptom control and prognosis stratification. Our main interests are ventilatory dysfunction and health services research. Furthermore, we also participate in international therapy studies, in particular on the

treatment of genetic ALS subtypes using novel gene-based therapy approaches and the available early access programmes (e.g. Tofersen).

Approximately 300 patients/year are seen throughout the centre.

Contacts

Priv.-Doz. Dr. Peter Reilich M.A.
LMU Hospital, Campus INN, Friedrich-Baur-Institute at the Neurological and Outpatient Clinic
phone: +49 89 / 4400 574 00
fax: +49 89 / 4400 574 02

Priv.-Doz. Dr. Florian Schöberl
Senior physician, neurologist, investigator, principle investigator
LMU Hospital, Campus GH, Neurological Clinic and Polyclinic
Marchioninistr. 15 81377 Munich
phone: +49 89 / 4400 76 674

Prof. Dr. med. Thomas Klopstock
Senior Physician, Neurologist, Investigator, Principle Investigator, Assoc. Investigator synergy-munich.de
LMU Klinikum, Campus INN, Friedrich-Baur-Institute at the Neurological and Polyclinic Department
phone: +49 89 / 4400 574 00
fax: +49 89 / 4400 574 02

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Location

Clinical Centre of the Ludwig-Maximilians-University Munich
City Centre Campus
Ziemsenstraße 1
80336 Munich

Hospital of the Ludwig-Maximilians-University Munich
Grosshadern Campus
Marchioninistraße 15
81377 Munich

Website:
http://www.lmu-als.de

Klinikum rechts der Isar of the TU Munich

In our specialty outpatient clinic we diagnose and treat patients with a broad spectrum of motor neuron diseases, but especially patients with ALS and SMA. In addition to state-of-the-art diagnostics, which are performed on an outpatient and inpatient basis, we also provide multidisciplinary care with drug therapies, assistive devices, supportive and palliative therapies. Our team has a keen interest in clinical and basic research: we study the disease basis, biomarkers for motor neuron disease and its early symptoms, as well as develop self-initiated clinical trials. In addition, we participate in clinical trials of the industry and would like to empower every patient to participate in a therapy trial if he or she wishes to do so. 

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Location

Specialty Outpatient Clinic for Motor Neuron Diseases
Department of Neurology
Klinikum rechts der Isar of the TU Munich
Ismaninger Straße 22
81675 Munich

Kontakt

Head:
Senior Physician Prof. Dr. med. Paul Lingor

phone: +49 89 / 4140 8580
+49 89 / 4140 4630
+49 89 / 4140 4606

Working groups
Outpatient clinics
https://www.premodials.med.tum.de

University Hospital Münster

The sites UKM Münster and UKM-MHS Steinfurt are part of the Neuromuscular Center Münster/Westphalia-Osnabrück of the German Society for Muscular Diseases (DGM). Outpatient care for patients with ALS is provided by the Outpatient Clinic for ALS and other Motor Neurone Diseases (UKM). The entire spectrum of neurological diagnostics is available as an inpatient at the UKM and a specialized ventilation unit (sleep laboratory) is available at the UKM-MHS. Here, there is long-standing expertise in sleep disorders in ALS, non-invasive and invasive ventilation as well as multimodal secretion management. The insertion of PEG probes, if necessary also under non-invasive ventilation, is carried out at the UKM-MHS in cooperation with the gastroenterology department there. In the ALS outpatient clinic at the UKM, initial diagnostics, examinations for the provision of a second opinion, electrophysiology, neuropsychological and molecular genetic diagnostics, measurement of respiratory muscle function, endoscopic swallowing diagnostics, provision of aids and remedies, drug therapy, and palliative medical advanced care planning are carried out as required. A longer-term support can usually be guaranteed; the aim is to provide comprehensive support for those affected and their families.

The research spectrum includes multicenter therapy studies, diagnostic studies, among others in the context of the MND-Net, own clinical projects and health care research (outpatient partners). In 2022, 150 patients with ALS were regularly cared for at both sites.

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Location

Department of Neurology with Institute for Translational Neurology
University Hospital Münster
Albert-Schweitzer-Campus 1
48149 Münster

Website:
https://www.ukm.de/kliniken/neurologie

Department of Internal Medicine
UKM Marienhospital Steinfurt GmbH
Mauritiusstraße 5
48565 Steinfurt

Website:
https://ukm-mhs.de/

Kontakt

Head of the ALS Outpatient Clinic and
of the Department of Neurology at the UKM-MHS:
PD Dr. med. Matthias Boentert
Specialist for Neurology, additional qualification
sleep medicine and palliative medicine

Contact UKM
phone: +49 251 / 834 80 16
fax: +49 251 / 834 44 74

Contact UKM-MHS Steinfurt
phone: +49 2552 / 79 0
fax: +49 2552 / 79 13 33

University Hospital Regensburg

For many years, the Regensburg Center has been providing both clinical and scientific supraregional care for the entire field of motor neuron diseases, especially amyotrophic lateral sclerosis and hereditary spastic spinal paralysis. This includes structured inpatient and outpatient diagnostics and therapy in a multidisciplinary team with neurophysiology, neuropsychology, physiotherapy and occupational therapy, speech therapy and social services. In addition, there is close cooperation with neuroradiology, the Center for Human Genetics Regensburg and the palliative medicine department. In addition to participation in the MND-NET registry, the clinic has repeatedly been a study center for various multicenter studies, most recently the ROCK-ALS study. Currently, approximately 50 patients are cared for annually.

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Location

Department of Neurology
of the University and the University Hospital Regensburg
Universitätsstrasse 84
93053 Regensburg

Kontakt

Prof. Dr. R. Linker
PD Dr. Z. Kohl (deputy)
phone: +49 941 / 941 300-1
phone: +49 941 / 941 300-3

Team:
Susanne Gegenfurtner (study coordinator)
Ohnmar Hsam (study physician)
Patricia Forras (study physician)

Albrecht-Kossel-Institute Rostock

Rostock is a supra-regional academic ALS centre, which cares for approx. 100 patients with ALS and frontotemporal dementia/year. Rostock was one of the eight founding members of the German Motoneuron Network (MND-NET). Our team consists of medical specialists, study nurses, therapists, a patient liaison officer and neuropsychologists. In our special consultation hour, patients with motor neuron diseases, especially amyotrophic lateral sclerosis (ALS), are diagnosed using state-of-the-art procedures (advanced electrophysiology, neurosonology, MRI, FDG-PET). Treatment refers to ventilation, nutrition, communication, symptom relief and provision of aids up to robotic systems and eye-guided communication in cooperation with other medical departments, especially pneumology (respiratory medicine). Inpatient stays for diagnostics and therapy are organised as required. In addition to medical treatment, the focus is on socio-medical aspects, including the provision of aid and remedies, outpatient care including social counselling and medical support in a situation that dramatically shortens life expectancy. Patients are included in national and international cohorts, drug studies and basic science studies in a standardised manner.

ALS is a multisystem degeneration that not only affects the motor system but can also affect prefrontal and temporal cortical networks associated with behaviour and cognition. ALS and half of the frontotemporal lobe degenerations (FTLD) share the same TDP43 pathology. Both are therefore grouped together under the term TDP-43 proteinopathies; both can be caused by one and the same mutation, e.g. in the gene C9orf72. For this reason, we carry out extensive neuropsychological and genetic examinations on all ALS patients. We are involved in the autopsy study of the German Centre for Neurodegenerative Diseases (DZNE BrainBanking) in cooperation with the Institute for Forensic Medicine of the University of Rostock.

Link to patient homepage

One focus in Rostock is research into cognition and behaviour in ALS. Why are 55% of ALS patients cognitively unimpaired, 35% impaired and 10% demented in the sense of frontotemporal dementia? Understanding risk or resilience mechanisms in the extramotor cortical networks in ALS patients would help to develop treatments for frontotemporal dementias (FTD). ALS stands as a model for this endeavour. With eye control-based neuropsychological diagnostics and therapy, we also make a contribution to health care research.

Link to workgroup cognition in ALS

Further research focuses include basic scientific studies on the pathophysiology of ALS. The aim is to transfer the knowledge gained from this into clinical therapy studies using modern stem cell technologies and imaging techniques (MRI, ultrasound).

Link to translational neurodegenes workgroup

In cooperation with the German Society for Muscular Diseases (DGM), there has been an ALS contact group M-V for relatives and patients for many years, which meets four times a year. In addition, there are meetings for relatives only. Since 2018, an annual ALS Day has been held in Rostock (DGM organised, target group patients and relatives), as well as an annual Rostock ALS Symposium (a further training course for doctors and therapists in M-V that will be held annually from now on).

Contact: Sylvia Röhring,

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Location

Clinic for Neurology
University Medical Centre Rostock
Gehlsheimerstraße 20
18147 Rostock

phone: +49 381/ 494 52 76

Kontakt

Heads:

Case management Mecklenburg-Western Pomerania:
Sophie Fischer
phone: +49 381/ 494 149 542

Website:
https://albrecht-kossel-institut.med.uni-rostock.de/

Ulm University Hospital

The special outpatient clinic for motor neuron diseases at the Department of Neurology at Ulm University Hospital is run by Prof. Albert Ludolph, Prof. Johannes Dorst and Dr. Regina Gastl. As a supra-regional centre specialising in ALS, more than 400 patients with ALS are seen here every year, and about the same number are cared for as inpatients every year. The diagnosis of ALS and other motor neuron diseases, such as SMA, HSP and ALS-FTD, is made after a careful overall view.

Our clinic offers multi-professional, interdisciplinary care. ALS patients are cared for in close cooperation between doctors, nurses and therapists, including physiotherapy, occupational therapy, speech therapy, respiratory therapy and social services. The range of services also includes the initiation of non-invasive home respiration and PEG placement, so that the entire care is provided from a single source. Genetic counselling, examination and molecular genetic therapy complete the spectrum.

Attached to the department is the clinical study center, which is headed by Dr. Joachim Schuster. Our center participates in all major international drug trials and additionally conducts its own studies with the aim of finding new, more effective drugs for the treatment of ALS.

Our center coordinates the German Network for Motor Neuron Diseases (MND-NET; contact person: Kornelia Günther), whose homepage you are currently visiting, and offers opportunities to participate in basic and biomarker research projects.

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Location

University Hospital Ulm
Clinic for Neurology
Oberer Eselsberg 45
89081 Ulm

phone: +49 731 / 177 12 01

Kontakt

Head of the ALS team:
Prof. Dr. med. Albert Ludolph
Prof. Dr. med. Johannes Dorst
Dr. med.  Regina Gastl

Head of the clinical study centre:
Dr. rer. nat. Joachim Schuster
phone: +49 731 / 500 630 00
Joachim.schuster@uni-​ulm.de

Contact person for the MND-NET and the preclinical gene carrier study:

Prof. Dr. med. Albert Ludolph

Prof. Dr. med. Johannes Dorst

Contact person for the MND-NET registry study:
Kornelia Günther
phone: +49 731 / 177 52 66

Contact for patients interested in clinical trials:
Elke Fröhlich
phone: +49 731 / 177 53 62

Contact for patients with ALS-FTD:
PD Dr. med. David Brenner
david.brenner@uni-​ulm.de

Website:
https://www.uniklinik-ulm.de/neurologie.html

DKD Helios Clinic Wiesbaden

One focus of patient care in the neurology department of our clinic is the diagnosis and interdisciplinary care of patients with Amyotrophic lateral sclerosis and related neuromuscular diseases in collaboration with radiological, cardiological, pneumological and gastroenterological colleagues. Patients can be treated on a day-care basis or as inpatients, depending on their needs and questions.

All neurological and imaging examination procedures necessary for ALS diagnosis are available. In the sleep laboratory of the clinic, non-invasive home ventilation procedures, adaptation of cough assistants and sleep polygraphy for the detection of sleep-related respiratory disorders can be performed. In gastroenterology, PEG insertions can be performed. Genetic testing can be done in collaboration with external genetic laboratories.

For more than 20 years, the center has also participated in therapy studies for the treatment of ALS and, since 2018, for the treatment of spinal muscular atrophy. In addition, an ALS discussion group is regularly offered for patients in cooperation with the German Muscular Dystrophy Society. In addition to medical colleagues, the team also includes physiotherapists, psychologists and study coordinators.

Approximately 160 + patients with motor neuron diseases are cared for in the consultation per year, including 100 + ALS patients, the others suffer from diseases such as poliomyelitis, spinal muscular atrophy, spastic spinal paralysis or multifocal motor neuropathy.

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Location

DKD Helios Clinic Wiesbaden
Neuromuscular Center Rhine-Main
Department of Neurology
Aukammallee 33
65191 Wiesbaden

Kontakt

Head:
Dr. med. Bertold Schrank

Substitute:
PD Dr. med. Tanja Schlereth

phone: +49 611 / 577 431
fax: +49 611 / 577 311

Website:
https://www.helios-gesundheit.de/kliniken/wiesbaden-dkd/

University Hospital Würzburg

In our motor neuron outpatient clinic, patients with ALS and SMA receive comprehensive care. In addition to advice on drug therapies and studies, this includes advice on aids, advice for relatives, adaptation of communication aids, swallowing diagnostics and therapy, as well as adaptation of mechanical coughing aids and home ventilation systems. We cooperate closely with the Institute for Human Genetics at the University of Würzburg.

In the field of ALS, we are involved as a center in multicenter randomized therapy studies, such as ROCK-ALS (Fasudil vs. Placebo) and MT-1186 (Edaravone oral). Our scientific interest is in the compensatory mechanisms of the CNS that help determine the individual course of ALS disease.  The Institute of Clinical Neurobiology (Prof. Sendtner) conducts basic research based on cell culture and mouse models for ALS and spinal muscular atrophies. Adult patients with SMA are treated with nusinersen intrathecally or risdiplam orally in our center after comprehensive consultation, and after informed consent, inclusion in the SMArtCARE patient registry.

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Location

Neurological Clinic and Polyclinic
University Hospital Würzburg
Josef-Schneider-Str. 11 (House B1)
97080 Würzburg

Kontakt

Prof. Dr. med. Daniel Zeller
Senior Physician | Head of Motoneuron Outpatient Clinic
phone: +49 931 / 201 23 757

Christine Leypold
Head of the Clinical Studies Department
phone: +49 931 / 201 23 510

Website:
https://www.ukw.de/neurologie