APST Research

for the use of APST Research mobile applications
Updated: 25 November 2025

There is a strong need for medical research in neurological diseases, particularly amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), and other neurodegenerative and neuromuscular disorders. Such research is essential for developing new therapies and improving health care in these conditions. A key advancement in modern medical science is the active involvement of patients through the structured collection of treatment data and the administration of therapy-related surveys. APST Research GmbH supports these research efforts by providing mobile research applications that collect and manage research-related data for medical studies.

1. Scope

1.1 These general terms and conditions of use (GTC) apply to the use of services of APST Research GmbH (hereinafter referred to as "APST Research"), and the use of mobile software applications, including the "ALS App", “ALS Research App”, "SMA App” and “Neurofilament App” and other mobile applications (hereinafter referred to as "APST Research Apps").

1.2 The services of APST Research support patients (and their relatives) with chronic, serious, or rare diseases to participate in medical research projects. Patients are authorized as users of APST Research Apps and receive individual user accounts. The legal basis for this is derived from the individual agreements made upon the conclusion of the contract and these GTC.

1.3 By using APST Research Apps, the patient (or legal representative) agrees to the terms and conditions and the privacy policy. The APST Research reserves the right to change these GTC, if necessary, particularly for factual and/or legal reasons, with reference to these reasons. The amended terms and conditions will be sent to the patient (or legal representative) by e-mail one month before they come into effect, to the e-mail address last provided to APST Research. If the patient has not objected within 4 weeks of receipt of the e-mail, the amended terms and conditions shall be deemed accepted. They shall govern the future contractual relationship between the patient and APST Research. If the patient (or his legal representative) objects, the contract terminates in accordance with clause 4.2.

1.4 The Patient may not assign the rights and obligations under this agreement. Therefore, the assignment of rights is excluded.

2. Subject matter of the contract and services

2.1 APST Research provides services for research coordination and networking between the patient, medical partners, and academic/scientific institutions. The framework of these services is referred to as the "research organization" and includes the following components.

Coordination of the partners involved
Provision of the necessary participation documents (e.g., questionnaires)
Provision of technical requirements for data collection at home or in medical facilities (through APST Research Apps or study software)
Conduct patient surveys via APST Research Apps, by phone, or by mail

The components of the research organization can be used together or individually. Details of data processing for these research services are described in the APST Research Privacy Policy.

2.2 The APST platform and associated applications are software products of Ambulanzpartner Soziotechnologie APST GmbH (hereinafter referred to as “APST”), which APST Research licenses for research. For this purpose, separate license agreements have been made between APST Research and APST, both located in Berlin, Germany. APST Research provides the APST Platform to patients for optional use. The APST platform is a structured database with an associated digital platform that enables the electronic collection, storage and processing of patient and research-related data as well as digital support for research processes.

2.3 Access to APST Research Apps is done with a personal username and password combination. Those credentials also enable patient authentication for APST Research Apps. The features of APST Research Apps, the data collected, user roles and authorizations, and the terms of use are outlined in the privacy policy.

2.4 APST Research shall provide the patient with APST Research Apps that allow participation in surveys and evaluation of disease symptoms, symptom progression, and treatment experience.

2.5 The APST Research supports the patients or their legal representatives and other users authorized by the patient to use APST Research Apps. APST Research offers a free telephone briefing before using Apps and, if necessary, further free, individually arranged training courses.

2.6 With the patient's consent, their data is released to medical partners for viewing, processing and use. The patient is free to revoke their initial consent at any time with immediate effect without giving reasons. APST Research shall ensure that the corresponding declaration of consent meets all legal requirements, particularly those relating to data protection.

2.7 The Internet connection and the web browser are not subject to the contractual relationship between the patient and APST Research.

3. Conclusion of the contract

3.1 The use of the services mentioned in 2.1 requires the conclusion of a user contract. For this purpose, the patient will be sent or handed the following documents:

privacy policy of APST Research for research coordination and the use of APST Research Apps and other study software for the purpose of data capture, assessment, aggregation, and analysis.
Declaration of consent to participate in research coordination and to use APST Research Apps

The patient completes the necessary information (address, e-mail address) on the consent form. By signing the consent form, the patient consents to the GTC and the data protection policy. The patient sends the signed consent form by mail or e-mail (with an attachment of the signed document) to the following address:

APST Research GmbH
Westhafenstraße 1
13353 Berlin
Germany

Phone: +49 (030) 81031410
or e-mail: [email protected]

After receipt of the signed consent form, the patient receives an e-mail with a registration link for the selected APST Research App. The patient assigns the username and password.

3.2 By concluding the contract, the patient declares his or her agreement with these GTC and the privacy policy.

3.3 The patient assures that the information given by him or her in the context of the conclusion of the contract is complete and correct. In the event of a violation, APST Research is entitled to immediately block the patient's user account.

4. Term and termination of the contract

4.1 The contractual relationship is concluded for an indefinite period.

4.2 Both contracting parties may terminate the contract at any time with four weeks' notice to the end of a month. The termination must be declared in writing or by email to the following address:

APST Research GmbH
Westhafenstraße 1
13353 Berlin
Germany

Phone: +49 (030) 81031410
or e-mail: [email protected]

4.3 Both contracting parties shall be entitled to extraordinary termination for a good cause, particularly in the event of a material breach of contract in which the continuation of the contract becomes unreasonable for one of the contracting parties.

4.4 After termination of the contract, personal data will be processed or deleted in accordance with statutory retention obligations and the APST Research Privacy Policy.

4.5 The provisions of Section 2.5 and the patient's rights arising therefrom shall remain unaffected.

5. Duties of the patient and safety recommendation

5.1 The patient must protect his access data (user name, password) carefully and like valuables from unauthorized access by third parties. The patient is expressly recommended to use antivirus, antispyware, firewall software, and current operating system versions. If the patient uses outdated hardware and/or operating system versions, the correct display of APST Research Apps may be limited. In this case, the patient can obtain information about suitable operating systems and their versions from APST Research.

5.2 The Patient undertakes not to post any illegal content on APST Research Apps or to make it accessible to third parties, for example, through forums, chat rooms, e-mail, or spam. Violations of contractual use restrictions entitle APST Research to take appropriate remedial action, including blocking the user's account. The patient is informed, in this case, immediately of the type, duration, cause, and extent of the blockage.

5.3 The accuracy of the data and information given by the patient is crucial for the quality of APST Research's services. As a result, the patient agrees that APST Research cannot be held responsible for any claims from third parties who rely on the completeness, accuracy, and timeliness of the data and information provided.

6. Costs of the use of services and software of APST Research

The use of APST Research Apps is free for patients and persons authorized by you.

7. Data security, consent to data processing, protection of patient data

7.1 APST Research is subject to the data protection regulations of the Federal Republic of Germany, the European Union (EU GDPR), in particular Articles 6 and 9 GDPR and 235.1 Federal Act of 19 June 1992 on Data Protection (FADP). APST Research is obliged to protect the data of patients and other parties involved on the basis of these provisions.

7.2 APST Research takes all organizational and technical precautions necessary according to the currently common standards to meet the requirements of data protection law, particularly to secure patient data against unauthorized access by third parties. The stored data is transmitted via the World Wide Web from the server to the patient's mobile device and vice versa using the SSL encryption standard.

7.3 The patient expressly declares his consent to the collection, processing, and use of his data by APST Research within the scope of the contractually intended purposes and by a separate privacy policy.

8. Liability

8.1 APST Research shall be liable without limitation for all damages caused by APST Research and its legal representatives and/or vicarious agents in cases of intent or gross negligence.

8.2 In case of slight negligence, APST Research shall be liable without limitation for injuries to life, body, or health caused by APST Research as well as its legal representatives and/or vicarious agents.

8.3 Liability under the Product Liability Act shall remain unaffected.

8.4 Apart from that, APST Research shall only be liable insofar as a guarantee of quality has been assumed, or an essential contractual obligation (cardinal obligation) has been violated. The term "cardinal obligation" refers abstractly to those obligations whose fulfilment is essential for the proper execution of the contract and on whose compliance the patient may regularly rely. In such cases, liability is limited to compensation for foreseeable, typically occurring damage.

9. Rights of use

9.1 APST Research grants the patient a simple (non-sublicensable and non-transferable) right of use, which is limited to the term of the contract.

9.2 The patient shall only be entitled to use the APST Research Apps under the contractual provisions. The software is not transferred to the patient.

9.3 The patient is not entitled to make the contractual service available to third parties. Access for relatives of the patient or other persons authorised by the patient is excluded. With the patient's consent, the third party authorised by the patient will receive an email from APST with a registration link for a selected APST Research App. This person will assign the username and password themselves. The patient is not permitted to sublet the contractual software.

10. Ratings

10.1 APST Research provides patients and persons authorized by the patient with software for the evaluation of symptoms, the patient's course of the disease, medical devices, drugs, and treatments within the APST Research Apps or other study software. The results of the assessments will be used for scientific evaluation and may be published only in aggregated, pseudonymised and/or anonymised form, without naming or identifying the patient, and only to the extent covered by the patient's consent and the APST Research Privacy Policy.

10.2 The evaluations must be objective and may not contain any illegal content. APST Research is not liable for the accuracy, quality or completeness of the assessments. APST Research will remove inappropriate or illegal evaluations upon clear indication.

11. Final provisions

11.1 If any provision of the contract is or becomes invalid or void, this shall not affect the validity of all other provisions. Instead, the invalid or void provision shall be replaced by a valid provision that comes as close as legally possible to the purpose pursued by the invalid or void provision. Such practices shall also apply to any loopholes in the contract.

11.2 The law of the Federal Republic of Germany shall apply. The legal regulations on the restriction of choice of law and on the applicability of compelling regulations, particularly the state where the patient has his or her usual stay as a patient, remain untouched. Suppose the patient is a merchant, a legal entity under public law or a special fund under public law. In that case, the registered office of APST Research shall be the exclusive place of jurisdiction for all disputes arising from the contractual relationship.