Privacy Statement for MPN Journal App

1. Who are we? 

We are MPN Journal. Our app helps people with myeloproliferative neoplasms (MPN) track symptoms and health data. We are committed to protect your privacy in accordance with the European Union’s GDPR (General Data Protection Regulation) and Dutch law. 

2. What data do we collect? 

A. Health Data with Strong Anonymity Protections 

• Your symptom logs (e.g., fatigue, pain levels) 

• Medication and treatments you record 

• Health values you add (like blood counts) 

• Lifestyle notes (like food, alcohol, smoking) 

Important: This data is pseudonymized according to GDPR standards, meaning it is not directly identifiable but could theoretically be re-linked to an individual through a separately held key. We treat it with the same level of protection as personal data. 

B. Technical Data 

• General statistics about how the app is used (for example, how often people use it) 

• Error reports (so we can fix bugs) 

C. Email via SimpleLogin 

• You sign up with a special alias email from SimpleLogin. 

• We only see your alias, never your real email address. 

• SimpleLogin forwards our messages to your inbox but keeps your real email address hidden. This means we never see your actual email address. SimpleLogin only knows the email address you create with them and does not have access to any other information about you.

3. What happens to your data and why? 

We process your data to provide and improve our services, assist you with support, and communicate with you when you opt-in. Below is an overview of how and why we process your data, along with the legal basis under GDPR:

International Use of Anonymous Data 

Aggregated and fully anonymized health data may be shared with academic or healthcare partners located outside the EU. Since this data contains no personal identifiers or links to individual users, these transfers do not fall under the GDPR’s Chapter V (Articles 44–49) on international data transfers. 

Important: 

• We never sell your data. 

• We never share your data for advertising purposes 

Processor Agreement 

The software behind the MPN Journal app is provided by Dialogger, a third-party service provider based in the Netherlands. Dialogger processes your data on our behalf under a formal Data Processing Agreement (DPA) that ensures compliance with the GDPR and protects your personal data. This agreement requires Dialogger to apply appropriate security measures and only process your data according to our instructions. 

Importantly, all data processing takes place on servers located exclusively in the Netherlands, ensuring adherence to Dutch and European data protection regulations. 

If you want to help with research or clinical trials: 

We conduct research using only anonymized health data, which cannot be traced back to you. If you choose, you can also sign up for clinical trials directly through the app. These are two separate processes, each requiring your explicit consent. 

• Your anonymized data is used for research purposes without any personal identifiers. 

• If you decide to participate in clinical trials, we will ask for your explicit consent before sharing any personal data with the clinical research team. 

• We will provide you with contact details so you can get in touch with the clinical trial team yourself. Your privacy and data protection are always our top priorities.

4. How do we keep your data safe? 

• All your data is securely stored and encrypted on servers located within the European Union (EU), ensuring your information is protected according to strict EU data protection standards. 

• Your email identity stays hidden thanks to SimpleLogin. 

• We keep your data only for the time required to provide our services or to comply with legal obligations. If you delete your account or ask us, we will permanently delete your personal data without unnecessary delay.

5. Your rights under the GDPR 

Under the General Data Protection Regulation (GDPR), you have the following rights regarding your personal data: 

1. Right to be informed (Articles 13 & 14) You have the right to know how we collect, use, and protect your personal information. 

2. Right of access (Article 15) You can ask us to confirm if we hold your personal data and get a copy of it. 

3. Right to rectification (Article 16) If your personal data is incorrect or incomplete, you can ask us to correct or update it. 

4. Right to erasure (Right to be forgotten) (Article 17) You can ask us to delete your personal data in certain situations, for example, if it’s no longer needed. 

5. Right to restrict processing (Article 18) You can ask us to limit how we use your personal data in specific cases. 

6. Right to data portability (Article 20) You can ask us to give you your personal data in a format you can use or send it to another organization.

7. Right to object (Article 21) You can object to how we use your data, especially for direct marketing or certain other uses.

8. Rights related to automated decision-making (Article 22) You can ask not to be subject to decisions made only by computers or automated systems if they have a big impact on you. 

Contact

If you have any questions about your personal data, this privacy statement, or wish to exercise your data protection rights, please contact us at: Email: privacy@mpnjournal.com

6. Changes to this statement 

We will update this privacy policy statement as needed to keep it current, accurate, and clear. If we make any changes, we will inform you through the app or by email. Your continued use of our Services after such updates confirms your acceptance of the updated privacy policy statement.