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.
The life of patients and their dependants is being facilitated by our vast knowledge of diseases and health care.
Our data analysis allows us to identify high standards of health care for your supply with assistive devices and therapies.
The treatment data is being used to develop new assistive devices, therapies and medicines.
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.
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Source: APST from 2011 until today
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.
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.
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.
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.
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.
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
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.
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 45131 Essen | |
| Street | Alfried-Krupp-Straße 21 | |
| Phone | 0201-434 41529 |
| Federal County/Germany | Berlin | |
| City | 13353 Berlin | |
| Street | Augustenburger Platz 1 | |
| Phone | 030-450 560132 |
Federal County/Germany
Baden-Wuerttemberg
| City | 68163 Mannheim | |
| Street | Speyerer Straße 91 - 93 | |
| Phone | 0621-8102 0 |
| Federal County/Germany | Lower Saxony | |
| City | 30625 Hannover | |
| Street | Carl-Neuberg-Straße 1 | |
| Phone | 0511-532 8848 |
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 44789 Bochum | |
| Street | Bürkle-de-la-Camp-Platz 1 | |
| Phone | 0234-302-6812 |
Federal County/Germany
North-Rhine-Westphalia
| City | 53127 Bonn | |
| Street | Sigmund-Freud-Straße 25 | |
| Phone | 0228-287 0 |
| Federal County/Germany | Saxony | |
| City | 01307 Dresden | |
| Street | Fetscherstraße 74 | |
| Phone | 0341-458 3876 |
Federal County/Germany
Saxony-Anhalt
| City | 06097 Halle (Saale) | |
| Street | Ernst-Grube-Straße 40 | |
| Phone | 0345-557 31 76 |
| Federal County/Germany | Thuringia | |
| City | 07747 Jena | |
| Street | Erlanger Allee 101 | |
| Phone | 03641-932 3450 |
| Federal County/Germany | Saxony | |
| City | 04103 Leipzig | |
| Street | Liebigstraße 20 | |
| Phone | 0341-97 109 |
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 48149 Münster | |
| Street | Albert-Schweitzer-Campus 1 | |
| Phone | 0251-83 474 94 |
Federal County/Germany
Baden-Wuerttemberg
| City | 89081 Ulm | |
| Street | Oberer Eselsberg 45 | |
| Phone | 0731-500 63003 |
Federal County/Germany
Lower Saxony
| City | 37075 Göttingen | |
| Street | Rober-Koch-Straße 40 | |
| Phone | 0551-39 65 287 |
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.
| 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 |
| 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/ |
| 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/ |
| 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 |
