INFORMATION

Care Network

We want to make the medical care data collected by us available to all parties concerned. Data is collected, evaluated, and presented anonymised on the APST Portal. The patients have given their prior consent to the publication of their data. By evaluating and publishing such data, we aim to answer open questions and aim to improve the care given to patients with chronic neurological diseases.

You receive independent information from real life care.

The life of patients and their dependants is being facilitated by our vast knowledge of diseases and health care.

We identify adequate ways to good treatment and health care.

Our data analysis allows us to identify high standards of health care for your supply with assistive devices and therapies.

Scientists can develop tomorrow’s new treatments and assistive devices.

The treatment data is being used to develop new assistive devices, therapies and medicines.

Amyotrophic lateral sclerosis (ALS)

What is ALS?

Amyotrophic lateral sclerosis (ALS) is a severe disease of the motor nervous system. In ALS, the motor nerve cells, which are responsible for the voluntary control of the muscles, progressively lose their function. The degradation of nerve cells (neurodegeneration) presents itself to people with ALS primarily as a reduction in strength and muscle weakness, muscle atrophy or cramps. As a result, their ability to move the affected body parts such as hands, arms, legs, chest or tongue becomes more and more limited as the disease progresses. In the advanced course of the disease, complete paralysis of the skeletal muscles can occur. ALS is therefore one of the most serious human diseases. There is no cure for this disease, but its symptoms can be alleviated through adequate treatment.

People with ALS in the APST Network

Total number of participants with ALS
6370

New participants with ALS in the past month
66

Who are the people living with ALS in Germany?

Current age

Age (years)
Percentage (%)
Number
under 20
 
4
20-29
 
22
30-39
 
82
40-49
 
311
50-59
 
1093
60-69
 
1855
70+
 
3003

Gender

Age at onset of initial symptoms

Age (years)
Percentage (%)
Number
under 20
 
7
20-29
 
23
30-39
 
117
40-49
 
327
50-59
 
709
60-69
 
839
70+
 
701

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

So far there is no cure for ALS. However, many treatments slow down the progression of the disease and alleviate existing ailments. APST has been collecting and evaluating treatment data since 2011. To measure the patient’s satisfaction we make use of the Net Promoter Score (NPS). The NPS is a metric that quantifies the treatment satisfaction and the likelihood that a patient would recommend APST’s services.

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

Medication

So far only Riluzol has been approved in Germany for the treatment of ALS. Riluzol slows down the progression of the disease moderately. In May 2017 the American Food and Drug Administration (FDA) has approved Edavarone for the treatment of ALS. Since then there is a pharmacological alternative for the treatment of ALS in the USA. In Germany treatment with Edavarone can be done without it being approved as a treatment based on an individual decision. Other than Riluzol addional medications are being used in the treatment of ALS to alleviate or control certain burdensome symptoms.

Agent (Active ingredient)
Ratings (Number)
Patient satisfaction (NPS)
Disease-modifying
Riluzol
Reason for intake:
ALS
Anzahl Patienten
2629
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
430
Geschlecht (%)
männl.
 
weibl.
Baclofen
Reason for intake
spasticity
Anzahl Patienten
317
Geschlecht (%)
männl.
 
weibl.
Amitriptylin
Reason for intake
sialorrhoea, depression, pain
Anzahl Patienten
170
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
531
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
724
Geschlecht (%)
männl.
 
weibl.
Massage therapy
Reason for treatment
Activation, spasticity, pain, muscle tenseness
Anzahl Patienten
491
Geschlecht (%)
männl.
 
weibl.

Assistive Technology and Devices

The supply with assistive devices is one of the most important measures to enable people with ALS a high degree of social interaction. During the course of the disease as the motorical constraints become more severe, they require the individual assistance through technical medical devices. These assistive devices maintain the patient’s operative range. They strengthen existing functions, support debilitated musculature or compensate for strength 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
631
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
17
Geschlecht (%)
männl.
 
weibl.

Nutritional support

An unwanted loss of weight affects over 50 % of people with ASL. Countering such weight loss is relevant as undernurishment and malnutrition can lead to a reduced quality of life and also a reduced lifespan. The nutritional aids can be consumed naturally (drinkable nutritional aid) or by way of an enteral feeding tube.

Nutritional support
Ratings (Number)
Patient satisfaction (NPS)
Sip Feeds
Reason for intake
Undesirable weight-loss
Anzahl Patienten
1943
Geschlecht (%)
männl.
 
weibl.
Enteral Tube Feeds
Reason for intake
Dysphagia, undesirable weight-loss
Anzahl Patienten
768
Geschlecht (%)
männl.
 
weibl.

Amyotrophic lateral sclerosis Functional Rating Scale revised (ALSFRSr)

The ALSFRSr allows to determine the current condition of patients with ALS and to document the progression of the disease. The rating scale consists of 12 questions. It assesses the bulbar symptons (speech, salivation and swallowing), fine motor skills (handwriting, cutting of food, dressing and personal hygiene, gross motor skills (turning in bed, walking, climbing stairs) as well as breathing. The patient themselves or the physician answers these questions on a scale from 0 (= no function) to 4 (= normal function). The total sum of the ALSFRSr is 48 points. During the course of the disease the ALSFRSr is usually being captured every three months. With help of the ALSFRSr the patients themselves or their physicians can document the progression of the disease online on the APST portal.

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

ALS centers in the APST network

Due to the relative scarcity, its progression and the intricacy of ALS a specialisation of and digital between centres and outpatient clinics appears reasonable. Our network of ALS Centres began in 2010 and has been developing ever since. The network is a group of centres interested in providing good care for their ALS patients. The centres support each other with the exchange of information, the conduction of studies and trials and professional concertation.

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 into and projects on Amyotrophic lateral sclerosis in our network

Research within the network consists of documenting if and, if so, how new medicines or therapies stand the test of use in real life and how access to existing therapeutical option can be made possible. As a result, medical guidelines and recommendations for the right choice, intensity and ideal timing for the use of medicines and specialised treatment measures (nutritional therapy, mask ventilation, cough assistance, assistive devices, physiotherapy et cetera) are being developed. Principals and sponsors of such studies may for instance be academic institutions, pharmacological companies, manufacturers of medical devices or expert associations.

Robot assisted services for people with Amyotrophical 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