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Greetings everyone. I am a long term AS sufferer that started getting symptoms as a child but was not diagnosed properly until my late 20's. Now I am over 60.
Looking for your feedback on research privacy methods. First I am going to drone on a bit with some background. The question is at the end:
As someone who has worked in the health field I have noticed that tons of research is now available on related illnesses but AS basically ignored or grouped in with other types of Arthritis. In fact in one particularly promising area where researchers have discovered important and powerful intervention for similar diseases only a single AS study is available while literally thousands of of research papers have covered everything else but.
I've been waiting for almost 60 years for actionable research. Ironically we, AS suffers, are way always ahead of the research game. We and IBS/IBD suffers figured out the diet links long before research backed up our real world wisdom.
A lot of potential and powerful new approaches are being used today for similar problems but no studies that include people with AS are currently on the "todo" rostero that I can see. #$&K that! We can do our own!!!
All that said, I value your option and would love to have you participate but first I need to hear from you regarding your privacy and how you want that handled.
If you want to participate as an organizer and/or participant let me know.
Here you are.
# Brief Summary of Data Handling Options
Below is a short overview of the different ways we can handle your data to protect your privacy, along with how these methods relate to HIPAA (Health Insurance Portability and Accountability Act) and the GDPR (General Data Protection Regulation).
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## 1. Anonymization
- **What It Means:** We remove or transform all identifying information so that it’s impossible to trace data back to any individual. - **Pros:** - Strongest privacy protection under both HIPAA and GDPR; truly anonymized data are no longer considered “personal data” in most cases. - No risk of re-identification. - **Cons:** - We cannot re-contact you or link additional information to your data if you want to update or withdraw it later. - Follow-up research for your specific data is not possible.
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## 2. Pseudonymization (Shared “Crosswalk”)
- **What It Means:** We replace your identifying details with a code. A separate, secure “crosswalk” file links the code to your identity. - **Pros:** - Lets us protect your identity while still being able to re-identify you for follow-ups (e.g., additional surveys or data updates). - Complies with HIPAA and GDPR, though data remain “personal” because re-identification is possible. - **Cons:** - Requires careful security measures (the crosswalk must be stored and accessed securely). - There is a small risk of re-identification if the crosswalk were ever compromised.
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## 3. Individual Crosswalk (Participant-Controlled)
- **What It Means:** Similar to pseudonymization, but **you** would hold your own unique key or code. We would not keep a master file. - **Pros:** - Increases your control over re-identification—only you can decide if and when to reveal the key. - Still meets HIPAA and GDPR requirements as a form of pseudonymization. - **Cons:** - If you lose your key, we cannot re-link your data for follow-ups. - Researchers would not be able to directly contact you would have to contact them - Re-identification is still possible if the key is used, so it’s not fully anonymized.
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## Share Your Preference
We want your input on which data handling method you feel most comfortable with:
1. **Anonymization:** No future re-identification or follow-up possible. 2. **Pseudonymization (Shared Crosswalk):** A coded link we can use for follow-ups. 3. **Individual Crosswalk (Participant-Controlled):** Only you hold the key to re-identify your data.
**Thank you for taking the time to review these options!** Your choice helps us respect your privacy preferences and ensure our research meets ethical standards under HIPAA and GDPR.
Thank you for your time!!! Just respond in the thread. It may take a while for the research survey itself, if you are interested in participating in some pre studies, let me know and once we have decided on our privacy stuff I will contact you here... All the Best by friends!
Last edited by CitizenScientist; 01/19/25 01:23 PM. Reason: Typos and clairifications
Long time AS sufferer with many "companion inflammatory illnesses" such as UC, CD, IBD... Joint replacements, on biologic for more than 20 years, one of the first. This has helped a lot!!! Looking for collaborators on a citizen scientist project to fill a huge, but easy to fill, gap in AS research in regards to stressors strongly linked inflammation based illnesses such as arthritis, IBD and a ton more. Let me know if you would like to participate as organizer, participate or both.
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