Privacy Policy

1. Scope

All users of the website whose personal data is collected, in line with the requirements of the GDPR.

2. Responsibilities

2.1 The administrator of NISALS.NET is responsible for ensuring that this notice is made available to data subjects prior to NiSALS collecting and processing their personal data.

2.2 All Staff of NiSALS who interact with data subjects are responsible for ensuring that this notice is drawn to the data subject’s attention and their consent to the processing of their data is secured.

3. Privacy notice

3.1 Who are we?

NiSALS is the short version of Neuroimaging Society in Amyotrophic Lateral Sclerosis. The NiSALS website (NISALS.NET) has been set up to provide an interactive platform for research centers specializing in Amyotrophic Lateral Sclerosis neuroimaging research. Suffering from a deadly and rapidly progressing disease, ALS patients and their families as well as healthy control persons provide neuroimaging data to find a better diagnostic tool and a better disease marker. They expect researchers to gather more insights into the causes of a terrifying disease, and thus help to develop effective therapies in the future. NISALS aims to provide quality controlled MRI data for the international scientific community from countries all over the world. To that end, interested researchers, clinicians and stakeholders can become members of NiSALS through obtaining an approved membership on the nisals website The scientific collaboration is governed by the NiSALS Bylaws.

The personal information collected from the NiSALS members on this website is used solely for the purpose of enhancing scientific collaboration, and is accessible only to members of NiSALS. It is used primarily for organizing the yearly NiSALS meeting and dissiminate information on NiSALS activities to its membership. We do not share this information with any external party without asking explicit consent from our members to the specific purpose.

Our GDPR Owner and data protection representative can be contacted directly here:
• Julian Grosskreutz <>
• 0049 3641 9323426

The personal data we would like to collect from you is:
Your real name and contact details, and optionally additional information on Your research and collaboration interests, should You enter it into Your user profile.

The personal data we collect will be used for the following purposes:
• Organize our membership body for the purpose of democratically governing NiSALS according to its statutes
• Inform members on the development of NiSALS
• Invite members to NiSALS meetings and manage registration to events

Our legal basis for processing for the personal data is the NiSALS Bylaws governance framework as accepted by the majority of the NiSALS members.

We do not collect data from special categories of personal data as defined in Article 9 of the GDPR. (i.e. racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, data concerning health or data concerning a natural person’s sex life or sexual orientation).

3.2 Consent
By consenting to this privacy notice you are giving us permission to process your personal data specifically for the purposes identified.
Consent is required for NISALS.NET to process both types of personal data, but it must be explicitly given. Where we are asking you for sensitive personal data we will always tell you why and how the information will be used.

You may withdraw consent at any time by sending an email to with the header “terminate membership”. Please be aware that NiSALS membership requires recording and using Your personal details. This, withdrawal of consent to using this data for above mentioned purpuses also terminates Your membership in NiSALS.

3.3 Disclosure
NISALS.NET will not pass on your personal data to third parties without first obtaining your consent.

3.4 Retention period
NISALS.NET will process personal data until termination of the NiSALS membership at Your discretion.

3.5 Your rights as a data subject
At any point while we are in possession of or processing your personal data, you, the data subject, have the following rights:
• Right of access – you have the right to request a copy of the information that we hold about you.
• Right of rectification – you have a right to correct data that we hold about you that is inaccurate or incomplete.
• Right to be forgotten – in certain circumstances you can ask for the data we hold about you to be erased from our records.
• Right to restriction of processing – where certain conditions apply to have a right to restrict the processing.
• Right of portability – you have the right to have the data we hold about you transferred to another organisation.
• Right to object – you have the right to object to certain types of processing such as direct marketing.
• Right to object to automated processing, including profiling – you also have the right to be subject to the legal effects of automated processing or profiling.
• Right to judicial review: in the event that NISALS.NET refuses your request under rights of access, we will provide you with a reason as to why. You have the right to complain as outlined in clause 3.6 below.
All of the above requests will be forwarded on should there be a third party involved (as stated in 3.4 above) in the processing of your personal data.

3.6 Complaints
In the event that you wish to make a complaint about how your personal data is being processed by NISALS.NET (or third parties as described in 3.4 above), or how your complaint has been handled, you have the right to lodge a complaint directly with the supervisory authority and’s data protection representatives..

The details for each of these contacts are:

GDPR Owner contact details
PD Dr. med. Julian Grosskreutz
University Hospital Jena
Department of Neurology
Am Klinikum 1
07745 Jena
Telephone: 0049 3641 9323426

4. Online privacy statement

Personal data
Under the EU’s General Data Protection Regulation (GDPR) personal data is defined as:
“any information relating to an identified or identifiable natural person (‘data subject’); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person”.

How we use your information
This privacy notice tells you how we, NISALS.NET, will collect and use your personal data for managing the online actitivities of the Neuroimaging Society in ALS (NiSALS).

Why does NISALS.NET need to collect and store personal data?
In order for us to provide you with a service we need to collect personal data for correspondence purposes and detailed service provision. In any event, we are committed to ensuring that the information we collect and use is appropriate for this purpose, and does not constitute an invasion of your privacy.

Will NISALS.NET share my personal data with anyone else?
We may pass your personal data on to third-party service providers contracted to NISALS.NET in the course of dealing with you. Any third parties that we may share your data with are obliged to keep your details securely, and to use them only for the purpuse You consented to. When they no longer need your data to fulfil this service, they will dispose of the details in line with NISALS.NET’s procedures. If we wish to pass your sensitive personal data onto a third party we will only do so once we have obtained your consent, unless we are legally required to do otherwise.

How will NISALS.NET use the personal data it collects about me?
NISALS.NET will collect, store and use the information you provide in a manner compatible with the EU’s General Data Protection Regulation (GDPR). We will endeavour to keep your information accurate and up to date, and not keep it for longer than is necessary. NISALS.NET is required to retain information in accordance with the law, such as information needed for income tax and audit purposes. How long certain kinds of personal data should be kept may also be governed by specific business-sector requirements and agreed practices. Personal data may be held in addition to these periods depending on individual business needs.

Under what circumstances will NISALS.NET contact me?
Our aim is not to be intrusive, and we undertake not to ask irrelevant or unnecessary questions. Moreover, the information you provide will be subject to rigorous measures and procedures to minimise the risk of unauthorised access or disclosure.

Can I find out the personal data that the organisation holds about me?
NISALS.NET at your request, can confirm what information we hold about you and how it is processed. If NISALS.NET does hold personal data about you, you can request the following information:
• Identity and the contact details of the person or organisation that has determined how and why to process your data. In some cases, this will be a representative in the EU.
• Contact details of the data protection officer, where applicable.
• The purpose of the processing as well as the legal basis for processing.
• If the processing is based on the legitimate interests of [Organisation Name] or a third party, information about those interests.
• The categories of personal data collected, stored and processed.
• Recipient(s) or categories of recipients that the data is/will be disclosed to.
• If we intend to transfer the personal data to a third country or international organisation, information about how we ensure this is done securely. The EU has approved sending personal data to some countries because they meet a minimum standard of data protection. In other cases, we will ensure there are specific measures in place to secure your information.
• How long the data will be stored.
• Details of your rights to correct, erase, restrict or object to such processing.
• Information about your right to withdraw consent at any time.
• How to lodge a complaint with the supervisory authority.
• Whether the provision of personal data is a statutory or contractual requirement, or a requirement necessary to enter into a contract, as well as whether you are obliged to provide the personal data and the possible consequences of failing to provide such data.
• The source of personal data if it wasn’t collected directly from you.
• Any details and information of automated decision making, such as profiling, and any meaningful information about the logic involved, as well as the significance and expected consequences of such processing.

What forms of ID will I need to provide in order to access this?
NISALS.NET accepts a passport or identity card copy, or personal confirmation of a NiSALS member of Your identity when you request access to Your personal data

A current version of this document is available to all members of staff and is published on NISALS.NET.

Julian Grosskreutz
NiSALS.NET GDPR Owner and data protection representative


Change History Record

Issue Description of Change Approval Date of Issue
1 Initial issue Julian Grosskreutz  2018-05-24