INFORMATION

Care Data

We would like to share the care data collected in our network with those affected by severe neurological diseases and those interested in our endeavors in order to gain new insights. Care data are captured via our internet portal, analyzed and then depicted hereon as anonymized pooled data. Patients have previously given their consent to having their data anonymized and published. The analysis and publication of care data is our way of contributing to answering any outstanding questions on the treatment and management of patients with chronic neurological conditions and thus enhancing the care they receive.

You are given independent information from real-world care settings

The lives of patients and their relatives are made easier with the knowledge on diseases and their treatment gained through this procedure.

We show suitable approaches towards good treatment and care.

Our data analysis enables us to identify your individual provision with high-end medication, treatments and assistive devices.

Researchers can develop the treatments and aids of tomorrow.

Treatment data are employed to develop new assistive devices and aids, therapy variants or medication in the future.

Amyotrophic lateral sclerosis (ALS)

What is ALS?

Amyotrophic Lateral Sclerosis (ALS) is a severe disorder of the motor nervous system. In ALS, motor nerve cells that control voluntary muscle movement progressively lose functionality. In people with ALS, the breakdown of nerve cells (neurodegeneration) primarily presents as loss of strength and muscle weakness, muscle dystrophy or stiffness. As a result, patients increasingly experience difficulty moving the affected parts of the body, such as hands, arms, legs and chest or tongue, as the disease progresses. In later stages of the disease, complete paralysis of the skeletal musculature may set in. For these reasons, ALS is among the most severe human diseases. There is no cure for ALS; however, treatment can alleviate associated symptoms.

People with ALS in the APST Network

Total number of participants with ALS
6099

New participants with ALS in the past month
54

Who are the people living with ALS in Germany?

Current age

Age (years)
Percentage (%)
Number
under 20
 
5
20-29
 
18
30-39
 
82
40-49
 
296
50-59
 
1063
60-69
 
1768
70+
 
2867

Gender

Age at onset of initial symptoms

Age (years)
Percentage (%)
Number
under 20
 
7
20-29
 
21
30-39
 
109
40-49
 
312
50-59
 
656
60-69
 
789
70+
 
667

Place of residence

0
> 500

View detailed map
For more information, please hover the mouse over the region.

Source: APST from 2011 until today

Treatment of people with Amyotrophic Lateral Sclerosis

As of date, there is no cure for ALS. However, various treatment options effect a slowing of symptom progression and alleviation of current symptoms. Since 2011, treatment data have been captured and analyzed on APST. The Net Promoter Score (NPS) is employed to measure patient satisfaction. The NPS is a coefficient quantifying patient satisfaction and their readiness to recommend treatments, services etc..

0-3 score points = recommendation absolutely unlikely
4-6 score points = neutral
7-10 score points = recommendation highly likely

Medication

So far, riluzole is the only drug approved for the treatment of ALS in Germany. It moderately slows disease progression. In May 2017, the American Food and Drug Administration (FDA) approved the drug edaravone for the treatment of ALS. Thus, in the USA there now is a second pharmacological treatment option for ALS. In Germany, treatment with edaravone is administered in the absence of approval by the European Medicines Agency (EMA) and the decision to use it is made on an individual basis. In addition to riluzole, further medications are employed to alleviate or control a variety of burdensome symptoms.

Agent (Active ingredient)
Ratings (Number)
Patient satisfaction (NPS)
Disease-modifying
Riluzol
Reason for intake:
ALS
Anzahl Patienten
2529
Geschlecht (%)
männl.
 
weibl.
Edaravone
Reason for intake
ALS
Anzahl Patienten
73
Geschlecht (%)
männl.
 
weibl.
Symptom-alleviating
Citalopram
Reason for intake:
compulsive laughter, compulsive crying, depression
Anzahl Patienten
414
Geschlecht (%)
männl.
 
weibl.
Baclofen
Reason for intake
spasticity
Anzahl Patienten
304
Geschlecht (%)
männl.
 
weibl.
Amitriptylin
Reason for intake
sialorrhoea, depression, pain
Anzahl Patienten
166
Geschlecht (%)
männl.
 
weibl.

Therapies

Occupational therapy, physiotherapy and speech therapy (therapeutics) are key approaches in the symptomatic treatment of ALS serving to alleviate impairment due to muscle weakness or muscle contraction. With occupational therapy, physiotherapy and speech therapy it is possible to alleviate symptoms and enhance the functionality of muscular movement that patients have preserved to improve motor function and their ability to communicate. The ratings offered here make visible the subjective benefit of the treatment for patients.

Therapies
Ratings (Number)
Patient satisfaction (NPS)
General physiotherapy
Reason for treatment
Deterioration of strength, activation, spasticity, pain
Anzahl Patienten
32
Geschlecht (%)
männl.
 
weibl.
Bobath Therapy
Reason for treatment
Deterioration of strength, activation, spasticity, pain
Anzahl Patienten
519
Geschlecht (%)
männl.
 
weibl.
Occupational therapy
Reason for treatment
Motor function, muscle functionality
Anzahl Patienten
222
Geschlecht (%)
männl.
 
weibl.
Speech therapy
Reason for treatment
Speech disorder, dysarthria, dysphagia
Anzahl Patienten
707
Geschlecht (%)
männl.
 
weibl.
Massage therapy
Reason for treatment
Activation, spasticity, pain, muscle tenseness
Anzahl Patienten
487
Geschlecht (%)
männl.
 
weibl.

Assistive Technology and Devices

The provision of assistive technology and devices is one of the crucial measures taken to enable people with ALS to engage in social activities as much as possible. Over the disease course, motor deficits progress which makes it necessary to support patients individually with medical-technical aids. These assistive devices preserve the patients’ radius of activity. They enhance any functionality still preserved, support the weakened musculature or compensate muscle functionality already lost.

Assistive device
Ratings (Number)
Patient satisfaction (NPS)
Dynamic Foot Orthoses toe OFF
Reason for treatment
Weakness of the dorsal flexor of the foot
Anzahl Patienten
222
Geschlecht (%)
männl.
 
weibl.
Cough Assist
Reason for treatment
Inefficacy of cough function
Anzahl Patienten
583
Geschlecht (%)
männl.
 
weibl.
Powered Wheelchair Permobil F5
Reason for treatment
Impaired mobility
Anzahl Patienten
222
Geschlecht (%)
männl.
 
weibl.
Powered Wheelchair Permobil C500
Reason treatment
Impaired mobility
Anzahl Patienten
21
Geschlecht (%)
männl.
 
weibl.
RotoFlex Sit and Rise Bed
Reason for treatment
Impaired mobility
Anzahl Patienten
16
Geschlecht (%)
männl.
 
weibl.

Nutritional support

Undesirable weight-loss affects more than 50% of all people with ALS. Weight-loss is crucial as under nutrition and malnutrition may be associated with loss of quality of life or a shorter life span. Nutritional support may be administered naturally, i.e. orally (oral liquid supplements or sip feed nutrition) or via an enteral feeding tube (tube feeds).

Nutritional support
Ratings (Number)
Patient satisfaction (NPS)
Sip Feeds
Reason for intake
Undesirable weight-loss
Anzahl Patienten
1875
Geschlecht (%)
männl.
 
weibl.
Enteral Tube Feeds
Reason for intake
Dysphagia, undesirable weight-loss
Anzahl Patienten
735
Geschlecht (%)
männl.
 
weibl.

Amyotrophic Lateral Sclerosis Functional Rating Scale revised (ALSFRSr)

The “Amyotrophic Lateral Sclerosis Functional Rating Scale revised“ (ALSFRSr) is a tool serving to capture the patients’ disease status and document the disease course. The ALSFRSr comprises 12 items. A patient’s bulbar symptoms (speech, salivation and swallowing ability), fine motor skills (handwriting, cutting food, getting dressed, seeing to their personal hygiene), gross motor skills (turning in bed, walking, walking the stairs) as well as breathing (respiratory function) are assessed. Patients or physicians rate the question with a score of 0 (= no function) to 4 (= normal function). The maximum total score on the ALSFRSr is 48 score points. The ALSFRSr is captured throughout the course of the disease, usually every quarter. Using the ALSFRSr, patients or the attending physicians may document the disease course online on the APST website.

Distribution of ALSFRSr-scores of people with ALS in the APST care network

ALS centers in the APST network

As ALS is a relatively rare, progressive and complex disease, it makes sense for outpatient departments, medical practices and doctors’ consultation hours to specialize in this field and liaise with one another via a digital network. Our outpatient departments’ network started in 2010 and has been growing ever since. The network comprises a group of outpatient facilities that are interested in making sure that their ALS patients are well taken care of. The network offers mutual support by exchanging information, performing clinical trials and coordinating their medical expertise.

Alfried Krupp Krankenhaus - Outpatient Department for ALS and Other Motor Neuron Diseases

Federal County/Germany North-Rhine-Westphalia
City 45131 Essen
Street Alfried-Krupp-Straße 21
Phone 0201-434 41529

 

Charité Berlin - Outpatient Department for ALS and Other Motor Neuron Diseases

Federal County/Germany Berlin
City 13353 Berlin
Street Augustenburger Platz 1
Phone 030-450 560132

 

Diakonissenkrankenhaus Mannheim - Consultation Clinic for ALS

Federal County/Germany
Baden-Wuerttemberg

City 68163 Mannheim
Street Speyerer Straße 91 - 93
Phone 0621-8102 0

 

Medizinische Hochschule Hannover - Outpatient Department for ALS and Other Muscle Diseases

Federal County/Germany Lower Saxony
City 30625 Hannover
Street Carl-Neuberg-Straße 1
Phone 0511-532 8848

 

Universitätsklinikum Bergmannsheil - Outpatient Department for ALS

Federal County/Germany North-Rhine-Westphalia
City 44789 Bochum
Street Bürkle-de-la-Camp-Platz 1
Phone 0234-302-6812

 

Universitätsklinikum Bonn - Clinic for Neurodegenerative Diseases

Federal County/Germany
North-Rhine-Westphalia

City 53127 Bonn
Street Sigmund-Freud-Straße 25
Phone 0228-287 0

 

Universitätsklinikum Carl Gustav Carus Dresden - Outpatient Department for Motor Neuron Diseases

Federal County/Germany Saxony
City 01307 Dresden
Street Fetscherstraße 74
Phone  0341-458 3876

 

Universitätsklinikum Halle (Saale) - Neurology Outpatient Department

Federal County/Germany
Saxony-Anhalt

City 06097 Halle (Saale)
Street Ernst-Grube-Straße 40
Phone 0345-557 31 76

 

Universitätsklinikum Jena - Outpatient Department for Neuromuscular and Motor Neuron Diseases

Federal County/Germany Thuringia
City 07747 Jena
Street Erlanger Allee 101
Phone 03641-932 3450

 

Universitätsklinikum Leipzig - Outpatient Department for Muscular Diseases

Federal County/Germany Saxony
City 04103 Leipzig
Street Liebigstraße 20
Phone 0341-97 109

 

Universitätsklinikum Münster - Outpatient Department for Neuromuscular Diseases

Federal County/Germany North-Rhine-Westphalia
City 48149 Münster
Street Albert-Schweitzer-Campus 1
Phone 0251-83 474 94

 

Universitätsklinikum Ulm - Outpatient Department for ALS

Federal County/Germany
Baden-Wuerttemberg

City 89081 Ulm
Street Oberer Eselsberg 45
Phone 0731-500 63003

 

Universitätsmedizin Göttingen - Outpatient Department for ALS

Federal County/Germany
Lower Saxony

City 37075 Göttingen
Street Rober-Koch-Straße 40
Phone 0551-39 65 287

 

Research and projects on Amyotrophic Lateral Sclerosis in our network

Research projects in our network explore whether and how new medications and treatment options stand the test of time in real-life settings. Furthermore, they elucidate how access to the therapy options available can be facilitated. As a result of this care research, medical treatment guidelines and treatment recommendations for the selection, intensity and timing of the optimum employment of medication and special therapies (nutritional therapy, mask ventilation, cough assist, assistive devices, physiotherapy etc.) are devised. Sponsors and supporters of these investigations may comprise universities, pharmaceutical companies, manufactures of medical technologies or expert medical associations.

Robotics-enhanced services in the care of people with Amyotrophic Lateral Sclerosis

Project Robotics-enhanced services for individual and resource-oriented intensive and palliative care in people with ALS (ROBINA)
Supported by Bundesministerium für Bildung und Forschung (German Federal Ministry of Education and Research)
Subject This project investigates the relief experienced in assistive and therapeutic care using robotics as well as the linking of robotics with nursing and care in people with ALS.
Target group People with ALS and their need for intensive and palliative care
Link http://www.projekt-robina.de
 

Dysphagia and intake of tablets in Amyotrophic Lateral Sclerosis

Project Needs analysis in ALS
Sponsor Desitin Arzneimittel GmbH
Subject General and special needs of ALS-patients with dysphagia. An interview with patients on dysphagia in people with ALS.
Target group Patients with ALS and dysphagia
Link https://www.ambulanzpartner.de/schluckstoerung-und-tabletteneinnahme-als/
 

Treatment of spasticity in Amyotrophic Lateral Sclerosis

Project Register study capturing the treatment of spasticity in an inter-cohort comparison of patients with Amyotrophic Lateral Sclerosis.
Sponsor Almirall Hermal GmbH
Subject In this project, pseudonymized and aggregated data on the collection, analysis and assessment of current care pathways, routine data and care standards in the treatment of spasticity in ALS are analyzed. The project is set out to develop or enhance medication for the treatment of spasticity in ALS.
Target group Patients with ALS and spasticity
Link https://www.ambulanzpartner.de/nabiximols-amyotrophe-lateralsklerose/

Provision of assistive devices in Amyotrophic Lateral Sclerosis

Project Provision of Assistive Devices in ALS
Sponsor Ambulanzpartner Soziotechnologie GmbH
Inhalt This project is designed to analyze the provision of assistive devices to patients in a real-world setting. The objective is to define treatment standards for the provision of assistive devices in ALS.
Target group Patients with ALS
Link https://link.springer.com/article/10.1007%2Fs00115-015-4398-2