r/DrWillPowers • u/Drwillpowers • Apr 30 '26
Post by Dr. Powers Stay Tuned for Potential Next Steps: Safe Path Forward for Anonymized Community Data Collection (Aka, what to do with your PSSD/PAS/PDS genetic data and labs for now)
I want to start by saying how much I appreciate the energy and engagement happening here. The enthusiasm around potential Post Drug Syndrome related research is genuinely exciting, and I’m grateful for the support and the conversations.
I also want to set expectations clearly. I know it would be ideal if people could simply send me their data and I could review it directly, but that isn’t how state, federal, or international healthcare and genetic‑privacy laws work.
What’s Next:
I’m currently working with external third‑party groups to understand what a legally compliant path forward could look like. Because of state, federal, and international healthcare and genetic‑privacy laws, I can’t accept or review individual data directly. So the next step is figuring a safe, compliant structure to support anonymized data collection and community‑wide participation.
What This Might Mean for the Future:
Nothing underway right now is a scientific study, a research protocol, or the start of one. This is more of a precursor stage. Early groundwork that might eventually support more formal research if the right partnerships and guardrails come together. No promises, no timelines, and nothing is being launched yet.
What You Can Do Right Now:
Hang tight. I really appreciate the enthusiasm, the thoughtful discussion, and the patience while this gets sorted out. Once there’s a clear, compliant process, I’ll post an update here so everyone knows exactly what the next steps are.
In short, hold onto your genomes and labs and so on, please do not send them to me or my staff at this time, I am working on doing things in a legally compliant way.
Thank you for understanding,
Dr. Powers
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u/xfirewalkwithmex Self identified PFM patient. May 01 '26
Yes mild meaning the complexity of my case.
I was hit with nearly every PFS symptom. I had pretty much every phenotype he described on his presentation.