Have you or your child been part of a medical study/clinical trial?

[Tap]

If you or your children were part of a study, can you tell me if it was worth your effort? I was contacted by a research hospital to see if we would consider allowing dd9 to participate in a a study at OHSU, a teaching hospital about 30 minutes away.   DD has been seen there in the past, so that is why we were contacted. 

 

They are comparing children with Autism with kids who have ADHD. They say it will take up to 10 hours total, spread over 4 different visits.  We would have to drive and park, which would make each appointment about 2.5 to 4 hours long. We would be paid $200 which would cover the driving expenses, but obviously not pay much for our time.  We would be doing it to support the study though, not for profit.

 

She would take some tests and have a brain MRI.  She has had an MRI before, so it wouldn't be a big deal for her as long as she could be sedated through it like she was last time.  MRIs don't use radiation, but the sedation does add a health risk.  She has had sedation 3 times in the past (all at this same children's hospital) and did fine each time, so there are no known risk factors for her with sedation.

 

I am going to call and discuss it more with the hospital.  I am just curious if anyone has experience in clinical trials.

 

Link to study if you are curious.

 

 

 

[quark]

My son has. He was a control participant in an autism study. He was subjected to the MRI too but without sedation. He was 8.

 

In our case it took about 3 visits, an hour and a half's drive one way so 3 hours of driving altogether 3 times over about 2 weeks' interval. Driving was the main hassle and son has acid reflux so making sure he had plenty of snacks and such was a small challenge but nothing insurmountable. The main draw was that he would have his IQ tested and he really wanted that. He was also extremely into neuroscience at the time and loved the whole MRI experience and stayed still the whole time. We made it as fun as we could with fun audiobooks to listen to on the way and back. We were not paid $200, more along the tune of $75, and that was fine with me. The huge benefit was having his IQ tested which gave me a lot more courage over making certain learning decisions.

[Melissa in Australia]

Not a clinical trial, but i am participating in a cancer study. It is long term,I think 20 years or more. They needed a huge amount of people who haven't had cancer, multiple thousands. I supplied DNA and filled out a large questionair, mostly about lifestyle andfamilybackground. Every few years they will contact me and I think do more DNA, possible blood tests etc.

 

Sorry about spelling and words bunching. Trying to type on a tablet is challenging for me

Edited July 10, 2016 by Melissa in Australia

[Melissa in Australia]

Ds22 has participated in quite a few medical studies at uni.the Uni he attends ( Monash) has a reaserch hospital attached to it( different faculty, same campus) . They are always after volunteers and the volunteers usually get a pizza voucher for participating.

[Seasider]

I participated in an eye condition study and it actually just followed a course of treatment the ophthalmologist would have provided anyway. I received my meds for free and $150 on top of that, for about 4 appointments over 6 months. The location was convenient.

 

In your case, I'm not sure if sounds like the benefits to your daughter and amount of $ compensation balance out the effort? Only you can judge that for sure.

[City Mouse]

I did one with my DS at the Children's Nutrition Research Center when he was a baby. I don't remember his exact age, but he was eating baby food. I don't remember all the details of the study, but it was something about tracking food intake and required an over night stay at the research center. i participated just for fun because I thought it was interesting. If I remember correctly, I got a Target gift card for $100 for participating.

[J-rap]

My dh has 4-5 times.  They have been hugely beneficial.  They have all been for learning language again after a stroke.  We get to meet top scientists in the industry and often get cutting edge therapy that has made a difference, as well as a current MRI to show what changes have taken place.  Plus, a free trip -- airfare, hotel stays, etc.  So, obviously in our case, they are definitely worth it.  I don't know if I would do it though if it were just to compare or study something, unless it was very convenient.  We would want to know that there is a chance we'd get some help/improvement from it.

 

In your case, if you think it might be fun or interesting, go for it.  On the other hand, if I knew my child could only do it if she had to be under sedation, I'd personally probably opt out.  (Unless it was something that might actually help her vs. just a comparison study.)

 

 

 

 

 

[kiana]

I have, yes. For me it was a way to get treatment I couldn't otherwise afford (It was comparing two treatments), and the cash ($200) was a bonus. 

[JFSinIL]

All four of my kids have been part of a study done by AGRE/CAN (Cure Autism Now) but the researchers came to our house to do histories, test each child, etc. over a few visits. There was a blood draw for each child, too, and any relatives who agreed to participate. This was years ago. My son with autism (etc.) has also been part of his neurologist's studies. I did turn down a different study that would have mean piling all four kids in the car to drive in bad traffic over an hour away a couple times a week - just too disruptive to daily life. But I do think it is important to try an participate in studies when it is feasible, as research has to get done.

[MeaganS]

We've done several. Right now we are participating in spark, a new giant autism study. Dd5 was in one as a baby through our Dr. about vaccines. She was in the control group and all I had to do was measure her temp and report it back. We got like $50 each time she was vaccinated over 2 years. I think the appointments themselves were free but they are free through our insurance anyways. I also did one with my most recent baby about skin to skin contact after birth with c section. That one had no money but was cool because I never got to hold my babies right after they were born before (4th csection). We have autism plus 2 rare conditions in our house and Dh is a physician, so I like to participate in whatever we can. We've done various other ones too.

Edited July 10, 2016 by Meagan S

[Caroline]

My DD is in a long term (infant to adulthood) medical study. She gets paid $120 per visit, and we go twice a year. I let her spend all the money. It has been beneficial because they diagnosed her celiac disease before she had symptoms and before she had major intestinal damage. It's about 30 minutes from our house. She is the oldest child in her part of the study. The researchers are so nice and have enjoyed watching her grow up. She is somewhat of a celebrity at the study, as she was the first baby in the study at our location.

[Serenade]

I participated in a clinical trial for rheumatoid arthritis back before I had kids.  It was pretty intensive in some ways, requiring an overnight or two in a hospital, and I had to have a catheter inserted in my arm so that I could get daily IV treatments at home for a couple of weeks.  I had a few visits with home health nurses, and there was always one on  call if we had trouble with the IV.  (My DH helped me with the IV).

 

I'm glad I participated in the trial.  Apparently no new discovers were made, but I always felt that the treatments helped me, even though the official study results were inconclusive.  My trial was testing doxycline (IV) and another med (pill form)  for effectiveness against RA.  It was a blind trial, so we weren't sure what we were getting, but in the end I found out I got the doxy.  It was almost 20 years ago now so my memory is a bit sketchy.  

 

One other benefit from the study is the opportunity to talk with different doctors and people in the profession -- when you are doing a study,  people are more likely to have time to interact more than during a typical doctor's visit.

 

I was paid about $200, too, but these are not the kind of things you do for money -- that wouldn't be worth it at all!

 

 

Edited July 10, 2016 by Serenade

[Daria]

My kid participates in a longitudinal study for kids at risk for a certain medical condition due to family history.  We initially signed up for a one time evaluation because they gave information about whether he was showing signs of being at even greater risk (he's in the "high risk" category, where about 50% of kids end up getting it.  Kids who show certain symptoms are termed "ultra high risk" and are more like 75% likely to get it.  There are medical interventions that make sense for UHR kids but not HR kids.)    It turned out that he really liked the experience, and got a kick out of the fact that he was paid so we signed up for the long term study, even though they don't do any treatment or provide the results of the testing in the long term study. 

 

So, he goes in every six months for testing, including a functional MRI where they have him answering questions and playing games in the machine.  They pay for transportation and he gets some money, which doesn't come close to covering the cost of me taking off work.

 

I hope that by having him participate we'll make a difference for future generations of kids, but other than the fact that my kid finds it fun there's no immediate benefit to our family, other than some cool pictures of his brain to hang on the fridge, and the fact that we learned that my kid is about the only person on the planet who can fall asleep by accident inside an MRI machine.  My understanding is that most people find the noise and enclosed space at least a little scary, but my kid (who has a severe anxiety disorder and chronic insomnia) finds it relaxing.  

[Crimson Wife]

We've done a few. Unfortunately the 2nd diagnosis of the hearing loss means that youngest DD no longer qualifies for most of the autism studies and the autism means she doesn't qualify for most of the deaf & hard-of-hearing studies. I understand the reasons for excluding "deaf plus" kids from clinical research (I'd probably do the same if it were my study), but as a parent I'm bummed about it.

[hornblower]

Yes, I have & would again. 

[RKWAcademy]

My twins (former preemies with ROP) had a very comprehensive eye exam at the major teaching university where they were born and in the NICU.  It was just a one day study and they were about 4 years old but the drive is an hour and a half.  It was nice they got to receive such a thorough exam and use of some neat technology for free.  They also received some amount for it.  Perhaps $50 each.  I can't remember but DH put it in their piggy banks (it may have been a Target card now that I think about it, but he still put that dollar amount in their piggy banks). 

 

The study was great.  However, I'd never do it again.  There was some mess-up with billing and we were charged for it.  It took months of phone calls and back and forth to get it resolved.  They reported me to collections and collection people were calling me.  It was a giant mess.  It was such a headache that I'd never do anything with that hospital again, barring severe medical trauma.  Each month, the head researcher and customer service would assure me it was resolved.  Then I'd get nasty overdue notices and collection calls the next month.  And no one believed I didn't owe the bill, so each time I had to go through the research lady and she was not particularly helpful.  And each kid got a separate bill and separate collection calls and separate disbelief that I didn't owe money!  Not worth the benefit of the eye exam.

 

However, if that billing issue hadn't left such a bad taste in my mouth, I would be all for a study that might help my kids/future preemies.

 

(I must still be mad about the ordeal since I typed so much about all the grief!)

 

I just remembered that when they were still in the NICU, I put them in a study on ROP, also.  However, I pulled them from it in the middle because it was negatively impacting them.  I felt bad for stopping it (It wouldn't have helped them, but was for research to help future preemies) but couldn't keep seeing them suffer every week when the "extra" eye exam happened.  They weren't the same every Tuesday.  We had to weigh the benefit in research versus negative impact. 

[Desert Strawberry]

I did a drug trial. It didn't work, made me sick (stomach ulcers). Worth it though. I was not having much luck with treatment options.

Sagg did a cross-species behavioral study. It was a fun little afternoon of puzzles and games. He was 2or three. There was no risk. 

I want to do experimental testing on Luna. It's a blood test for her, me, and, D, to see if she has any unique genetic mutations. The cost is prohibitive-$10k. D doesn't want to do it. I'm going to discuss it with her doctors over the next few weeks. I think we can maybe get the testing covered by a research study.

It really depends if you think it's important to you. If not for all the preemies and NICU babies-and those who didn't survive-my children would not be here. I feel pretty strongly about contributing when we can, because we have already benefited from the risks others have taken.

I expect that I will need experimental drugs again in the future. I know it could be very damaging, but I feel the risk is warranted.

Edited July 11, 2016 by Desert Strawberry