Personal data statement & privacy policy MS sherpa app

Sherpa BV - Nijmegen - February 2025

Legal Basis

You decide whether you want to use the MS sherpa app and, therefore, whether you want to provide personal data to us. If you do not want to provide your personal data, you cannot use the MS sherpa app. This is because your personal data is needed to use the app. You can decide to stop using the MS sherpa app at any time.You decide whether you want to use the MS sherpa app and thus whether you want to provide personal data to us. If you do not want to provide your personal data, you cannot use the MS sherpa app. This is because your personal data is needed to use the app. You can decide to stop using the MS sherpa app at any time.
By giving permission for the processing of your personal data, you give MS sherpa BV, located at Transistorweg 7, 6543 AT, Nijmegen, as a data processor permission to process your personal data listed below on behalf of the MS center (the controller). This use is in accordance with the arrangements described in this Privacy Statement.
You may withdraw your consent to the use of your personal data at any time. See also below "More information about your rights in data processing".

What personal data MS sherpa processes, and for what purposes

In order to provide insight into the symptoms of your disease state to you as a user and/or your practitioners, we process the following data on behalf of the MS Center:

● Answers to the symptom questionnaire on such topics as concentration, stress, memory, pain, mood, energy and the impact of MS on your functioning.

● Sensor data collected while you run tests on your phone, as well as test results. Exactly what data we collect depends on which tests are selected for you by your practitioner. For the 2-minute walk test, we use data from the GPS sensor, or your location data (for calculating distance covered during walk tests), accelerometer and gyroscope, among others. We collect and use location data from your device during the 2-minute walk test even when the app is running in the background during the test.

● Personal notes you take in the app, as these too can be valuable to your treatment or research.

● Personal data that we store only if you complete the profile page in your app: Your name, in order to address you personally in the app. 

● By your completed profile information and medical data; to determine reference values determine and better interpret your test results. We do not use automated decision making.

What personal data MS sherpa stores, and for what purposes

Sherpa has a service desk for support or problems with the app. To perform this service properly, the following data is stored:

● The email address of your MS sherpa account for correspondence with the service desk.

● The date you received an email invitation to start using MS sherpa, whether your email address was verified, and the dates you activated the app.

● The date you last logged in, with associated IP address, phone device, operating system, and the last time you set or changed your password.

● The date of your last successful test

● Data on correct execution of tests, error messages, etc. for improvement

of the product.

The processors of your personal data and where your data is

We provide your practitioners with access to your data so that they can use it in monitoring your disease progression. If you are participating in a specific study, we provide researchers with access to your data in accordance with the approval you have given them. Your practitioners and/or the relevant researchers may enter your data into an Electronic Patient Record (EHR) or other database in accordance with the privacy statement of the relevant organization.

We use servers of IT service providers to store and process your personal data. We only use servers within the European Economic Area.

In the interest of developing and managing the MS sherpa app, we may share your personal data with our sister company Orikami BV, located at Ridderstraat 29, 6511 TM, Nijmegen.

Data retention period

We keep your data for at least 5 years after the last use or after the account is cancelled by you as a user, unless otherwise stated, for example in research contexts. Your data may still be important for your treatment even after a longer period of time, which is why we keep your data for that long. After the retention period we will delete your data. Of course, you can always ask us to delete your data before the end of the mentioned retention period.

How to access your data

You can always view your own data and change it if necessary. If you want to know what data we have recorded about you or if you want to change your data, please contact support@mssherpa.nl. You can also submit a request to us to have your data removed from our database.

Learn more about your rights in data processing

Under the General Data Protection Regulation, you have the right to view, correct or have your personal data deleted. You also have the right to withdraw your possible consent for data processing or object to the processing of your personal data by your practitioner and/or Sherpa BV, and you have the right to data portability. This means that you can submit a request to us to send the personal data of you that we hold in a computer file to you or an organization named by you.

You may send a request to inspect, correct, delete, transfer your personal data or withdraw your consent or object to the processing of your personal data to support@mssherpa.nl. To make sure that the request for inspection is made by you, we ask you to send a copy of your ID with the request. In this copy, black out your passport photo, MRZ (machine readable zone, the strip of numbers at the bottom of the passport), passport number and Citizen Service Number (BSN). This is to protect your privacy.

Important: Your clinicians and/or researchers in scientific research in which you are participating may also have information about you in MS sherpa, such as in the Electronic Patient Record. If MS sherpa deletes or corrects information about you at your request, your information with them will not be affected. If you do want your data corrected or deleted there as well, you can contact your practitioner or researcher yourself.

If you have questions or complaints about the processing of your personal data, please send an e-mail to our Data Protection Officer at privacy@mssherpa.nl. We will respond to your request as soon as possible, but in any case within four weeks. The contact details of your healthcare facility's Data Protection Officer can be found on your healthcare facility's website.

If your questions or complaints about the processing of your personal data are not handled by us to your satisfaction, you may contact the Personal Data Authority.

Privacy statement changes, questions or comments

This privacy statement is subject to change. These changes will be announced to you via the application or via the website www.mssherpa.nl.

If you have any questions or comments about this privacy statement or our privacy policy, please email info@mssherpa.nl.