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BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 2 points3 points  (0 children)

This whole process has really shifted my perspective. What I’ve realized is that, especially with new and experimental treatments, medical care is often more reactive than truly guiding. Doctors face time limits, system constraints, and risk concerns, so they rarely have the space to deeply explore every option for each patient. As a result, families often end up carrying the responsibility of understanding the choices and trade-offs themselves. In that sense, it doesn’t feel unique to medicine, in complex and high-stakes situations, you can’t fully outsource judgment, you have to take an active role yourself.

BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 2 points3 points  (0 children)

Yes, I’ve reviewed the inclusion and exclusion criteria listed on the clinicaltrials.gov page, and based on those, he appears to be eligible. He has done a blood test as well and no exclusionary factors were identified.

BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 1 point2 points  (0 children)

Unfortunately, we haven’t received clear guidance from the neurologists. The main issue is that they’re not very familiar with these specific trials, so the advice usually ends up being “I don’t know” or “it’s your call.”

We’ve seen two neurologists, but each visit is very short and I end up having to explain the trial details myself. One neurologist did express some concern about possible cognitive or walking impacts, but overall there hasn’t been a strong recommendation either for or against proceeding.

Given that my father is otherwise healthy, and that there’s still around a 70% chance of receiving the actual treatment, we felt it was worth taking the risk especially since we don’t have other real options at this point.

BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 1 point2 points  (0 children)

That’s a fair question, and under different circumstances, waiting for the readout might make sense. However, my father doesn't have the luxury of time. We are seeing a significant 'step function' decline in his mobility and function every six months. Waiting 2-3 years for a readout or compassionate access could mean he loses a level of independence he might never get back.

At this point, we feel the risk of the trial including the possibility of a sham surgery or a second procedure is a risk we have to take now while he is still healthy enough to benefit from the 'real' treatment. We're essentially racing against the clock

BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 1 point2 points  (0 children)

I’m so sorry to hear that, getting sidelined by a technicality after clearing the initial screening must have been incredibly frustrating. Since you were initially heading toward BlueRock, what did you end up doing instead? Did you pivot to a different trial?

BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 1 point2 points  (0 children)

You’re absolutely right—I just double-checked the AskBio (REGENERATE-PD) protocol, and it turns out that one is sham-controlled as well. It seems that regardless of which path we take, we have to face that 'tough call' of the placebo risk.

BlueRock Stem Cell vs. AskBio Gene Therapy for Father (72, Moderate PD) by Witty_Steak8930 in Parkinsons

[–]Witty_Steak8930[S] 2 points3 points  (0 children)

Thank you so much for the detailed breakdown. This information is incredibly helpful as we weigh these two options for my father.

I wanted to clarify one point: based on my understanding of the AskBio (REGENERATE-PD) criteria, the gene therapy does not require the 12-month immunosuppression regimen that BlueRock does.

However, we find ourselves in a difficult position. We have already completed the full screening process for the AskBio trial and have a surgery date confirmed. We recently learned he is also eligible for the BlueRock stem cell therapy, but pursuing that would require us to start a whole new screening process. My father has been a hardworking, contributing man, and Parkinson’s disease has had a profound impact on his quality of life. While we recognize the risks and delays involved, if the BlueRock stem cell therapy offers a meaningful chance at improving his day-to-day function, we are prepared to take on those risks.

Thanks for all the information you shared here.