Would you participate or let your child participate in a medical trial?

My son has a genetic retina disease. Only females carry and pass it on but it only appears in males. Basically it causes progressive loss until teenage years then goes away until 60's/70's. The range of loss can be anywhere from 20/40 vision all the way to past legally blind. Very rare to cause black out blindness.

No known cures. Surgical or medical. We might have a chance to partake in a gene therapy trial with the hopes of curing disease and improving vision.

My son is 9. So take chance now or wait for FDA to eventually approve a cure years from now.

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Take the chance

Medical trial for sure in this scenario. When there are standard treatments you have to weigh your risk/benefits of the investigational drug vs the standard. But when there is nothing currently available, I would go for it.

Tough call. The issue is that if you go with this treatment and it isn't successful, it may disqualify him from a future treatment that might have better chances of success. Happened to a relative of mine.

If it was me, I would do it as long as I felt the research was solid enough or the people involved seemed credible.

That is the tough part. Because you are right about being disqualified. No severe side effects from the medicine, can have issues from the injection but same for any eye procedure and very rare.

Other negative is it is at Michigan in Ann Arbor and my son detests Michigan but I think in this case we can let our fandom take a back seat.

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Wolves of Babylon;1765597 wrote: Other negative is it is at Michigan in Ann Arbor and my son detests Michigan but I think in this case we can let our fandom take a back seat.

Explain to him that Jim Harbaugh is not a Doctor and as for schools, UofM really is a fine institution.

I've been trying to do medical trials, but no luck in getting any.

I'm sorry to hear about your son. That's a tough call. It's hard to say what I'd do if it were my kid(s).