How do you feel about new treatments and clinical trials?

[Vesa]

Are you aware of any new treatments being researched? How do you feel about participating in clinical trials? What would prevent you from involving your child in a medical research study?

Interact and reply in the comments below!

[melissamae_ia]

I am not up to date on any trials. I think they are great for people who need to find a treatment that will work for them that they havent found yet. Right now I would not put my daughter in one because she is well managed already. I would be worried about side effects or long terms effects a new medicine could bring on.

[Bugslife]

My son is part of a kidney study for kids since he was little. We make it his choice if he wants to participate. Its once a year and he likes doing it not for getting treated like a Guinea pig but to help doctors understand better at how kidney disease effects kids through the years in hope they get answers for another child in the future. But we are at a lost for my sons disease and how to keep him from getting infection so we are open to every option.

[JaMoMom]

When we for the t started there were not any known studies that we knew or heard of or were invited for. At this point, we are satisfied with the treatments that were finally given for maintenance. Since we are not aware of the reasoning WHY Nephroptic Syndrome happens, since there does not seem to be a similar reasoning in any of my findings, I think to narrow down the symptoms or precursors for such a condition and have upfront childhood testing at birth might be an insight.

[MCMom]

If we were at a point where he wasn't responding to the medicine we would definitely consider trials. We haven't done anything yet, but would be open to any research studies that didn't change the treatment plan he's on (if its working). We would love to help figure out more about this disease if there was a way!

[sarahtar]

Because my DS has so many other diagnoses as well, I'm not sure he would qualify for any clinical trials. I'm not opposed to trialing new treatments like new anti rejection protocols, but I'd want them well-studied in adults FIRST. It would also make a difference to me if it meant having to drive in to our transplant hospital more frequently than we already do and if that time would be reimbursed.

I know there are a few studies going on at the big hospitals on the coasts with peds transplant recipients. Nothing where I live.

[Samhan]

My son is part of clinical research since his disease is so rare, we're part of the Dent Disease Foundation. His records are used in research, in hopes that sooner or later we can find some treatments. As of right now, there are no treatments at this time. My biological parents are awaiting results to see if 1. My mom is a carrier or 2. My dad has the disease and doesn't even know. Those results will help us learn a lot of our family history.

[3pigsny]

I'm on the fence about this considering my daughters age. Right now, the current treatments work for us. If we had no other options obviously I would be a little more willing to try.

[Alexsmom]

We saw a clinical trial taking place at Colombia University in NY, however we live in PA and that would be quite a distance to go for weekly appointments - I asked my son if he had any interest in signing up for it, and he said no. With school and his having a part time job, we'd really have to juggle alot around, and that would be if he even was accepted into the clinical trial. If one was closer and he was a match, I'd be all for it. I work for a pharma company and see how important clinical trials are to bringing new lifesaving drugs into the marketplace. And the opportunity for getting in on a new drug that could potentially help my son from declining healthwise, would be worth it.

[Pinky4]

I am not aware of any new treatments being researched or clinical trials for my daughters specific condition. I have googled and tried to find things but have not had any luck. I would be willing to entertain the idea of a clinical trial, research or treatment options. Of course I would definitely get my daughters input. She is 12 years old, and I would include her in the decision making process. I would have to weight the risks vs the benefits to my daughters health before agreeing to participate in a study or clinical trail. I am open to this option. Currently she is taking meds to decrease the amount of protein in her urine but it doesn’t stop it. I want her to be in remission so there is no protein at all but at this point the nephrologist wants to wait and see if she will spontaneously go into remission. He labs have been getting better and better and 1/3 of the patients with her type of NS go into spontaneous remission. The waiting is HORRIBLE!

[ShareYourSpare]

From a few of my contacts on the West Coast, I've heard of some pediatric transplant recipients taking a new anti-rejection medication. Things are going well for the children I'm following. My son is stable taking Prograf only (MMF as a supplemental med causes him to become too immunosuppressed and EBV sky-rockets), so his doctors and my husband and I agree to keep things as they are. My son has bloodwork done every couple of months and an annual ultrasound. All has been looking good with our current regimen, so we don't see a need to change. As a result, we do not feel the need to participate in a clinical trial. We would consider it if all other established treatment options with proven results weren't working for him. Happy to participate in a medical research study if that means following his current plan of care and seeing how it works for him in the long-run, but not ready to rock the boat when it's smooth sailing!

[NephMom]

I have seen some news from NephCure that there are some clinical trials starting. My child does not qualify for them. I would be happy to enroll in a trial if I understood that the benefits would outweigh the risks. For example, if it were a treatment that had been used for something else, but showed promise for nephrotic syndrome. If it was a completely new drug that nothing was known about, I would certainly be more concerned about the unknown.

[Justaconcernedmom]

Now that our daughter is 5 we would be more open to clinical trials, then when she was an infant. She would be able to understand that she is helping the doctors and even though some of the procedures hurt, she is helping science. We would want to be informed on the whole clinical process and the possible outcomes from such studies. I am unsure if I would allow her to be a part of a trial that was just starting... just don't know. I will repeat what some posters have said about letting it be there choice once they are old enough to decide.