Your Data, Privacy & Research Participation

We’ve tried our best to build MyClusters centered on privacy by design. As a Clusterhead and a user myself, I’m trying to find a balance between strict privacy standards and maximizing the potential for research insights. MyClusters is being built with this balance in mind. Please read on, and tell us where we can improve. (Read our Privacy statement here)

It is common knowledge that if a product is free, you are the product, or rather your data. Here we are being upfront about it, saying we don’t need all your data. We won’t serve you targeted ads, or sell your data to insurance/pharma companies. We don’t collect excessive personal information that can be traced back to you (we don’t even know your name). We believe we can be transparent about the data we share, so you can make an informed decision. Hoping you can find your questions answered below: 

Why We're Asking for Your Consent

Most Cluster Headache studies are confined to small patient groups in specific locations, which makes it difficult to:

  • Understand how the condition manifests across different populations

  • Identify patterns that only become visible with larger datasets

  • Study the relationships between  triggers, timing, and treatments

  • Validate findings across diverse patient groups

For example, there are certain things we know anecdotally about Cluster Headaches, like it’s not always under 3 hours, how (un)common side switches are that are still not studied, Verapamil always doesn’t work, and many others that may not necessarily present in a time bound study. 

We're speaking with leading cluster headache research groups across Europe who see the potential of properly anonymized real-world evidence. Your participation could help uncover new areas of investigation that aren’t possible with time-bound, geographically bound studies. 

My n=1 report on the app  from my last cycle revealed I don’t get attacks on Wednesdays. While this is super intriguing to me, it is insignificant to researchers with a sample of 1, in fact even detrimental to study small samples.  If patterns emerge from bigger diverse samples, that’s when it holds significance as real-world evidence. 

By consenting to share your data with research, you are helping to potential advancements in understanding and spreading awareness of Cluster Headaches. Maybe not immediately, but my hope is that it creates momentum that can create progress in the next 5-15 years.

If you consent, we will share your data with researchers. Some questions we’ve tried to answer while working with limited resources in designing the product 

  • Do users have control over whether their data is being shared or not? 

  • How can we make it easy for users to change their mind and withdraw consent?

  • How do we minimize personal data collection? 

  • How can we anonymize and strip personal identifiers before sharing our data? 

  • What is our policy around targeted advertising? 

  • How can we best protect the data against breaches? 

  • How do we make it easy for users to get their own data back, and ask for it to be deleted?

If you do not consent, we will not share your data it’s only for your personal insights. 

What Data is Shared with Researchers?

Researchers can access anonymized data about:

  • Attack patterns and timing

  • Pain levels

  • Attack location (which side of your head) 

  • Trigger factors

  • Medication usage categorised by Preventive, Acute, Transition, Alternate treatments

  • General demographic information (age, gender, country)

    • Ethnic background - we collect this to ensure how CH affects everyone and that research is therefore beneficial to everyone

    • This field is entirely optional 

    • We have a separate consent and withdrawal option for this. 

    • However, this is sensitive information, if you are concerned, please skip this option 

  • Lifestyle data (whether you smoke, drink, how much you sleep/exercise) 

  • Diagnostic data (whether you are diagnosed, when were you diagnosed)

In our onboarding, we’ve also made as many of these fields optional as possible. So again, it is completely your choice whether you want to enter this data.

If you do fill them in, and not consent to sharing, we will not share your data with anyone. You will still be able to see your anonymised cluster profile that you can choose to share within your network/community. 

If you skip all the optional data fields, and consent to research sharing this is what we will share 

  • Attack patterns and timing 

  • Pain level

  • Triggers 

  • Acute medication 

  • Age, Gender, and  Country 

We never share:

  • Your name or phone number (We don’t collect it)

  • Precise location data (We only ask for your country)

  • Any information that could identify you personally (Your data is stripped of identifiers and anonymized) 

How We Protect Your Privacy

Some of our privacy implementations 

  • Strict GDPR Compliance: We adhere to the highest European data protection standards

  • Minimal Data Collection: We only collect information that can be beneficial to research

  • Strong Security: Your data is protected by industry-standard encryption and security measures

  • Complete Anonymization: All data used for research is stripped of identifying information

  • No advertising - ever

Your Rights

You have full control over your data:

  • Access your complete data anytime

  • Request a copy of your data by emailing privacy@myclusters.nl

  • Modify or withdraw your consent through account settings on the app

  • Request data deletion at any time by emailing privacy@myclusters.nl

Data Security Measures

We employ multiple layers of protection:

  • Encryption at rest

  • Secure servers located in the EU

  • Regular security audits

  • Strict access controls

Questions or Concerns?

We're here to help. Contact us at privacy@myclusters.nl for any questions about:

  • Data privacy

  • Research participation

  • Your rights

  • Security measures

  • Consent modification

  • Suggestions 

By sharing our experiences in a privacy-protected way, we can help researchers better understand this devastating condition. This isn't just about collecting data - it's about building a resource that could lead to breakthroughs in how cluster headaches are understood and treated.

Hope I’ve answered most of your pressing concerns here. Read our complete Privacy statement also please. One last time, please contact us at privacy@myclusters.nl in case we’ve missed out on something.