I have to say, I am a little surprised at how much hospital and clinic visits are required. We have participated in other study drugs, and didn't have to be at the hospital nearly as much.
It is all interesting none the less...we certainly wouldn't be heading out of town this summer if he got on it any time soon. I have to trust in God with all of this and the timing.
So I am just pasting her response below for those who are interested...
I think about your family often and I hope you are all doing well.
Currently the study is still requiring the child to be near end of life which they define as 90 days. As you are aware that is a pretty subjective assessment with children with this diagnosis.
We hope that the end of life requirement will be removed, but at this time we are not sure it will.
The study initially requires a patient to come in and have a whole day of testing at screening. There are 2 overnight stays at baseline and week 3 and then an appt in the clinic almost weekly
except week 5, 7, 9, 11 and 12. After week 13 if a patient continues in the study the visit is every 3 months.
Hudson is definitely in our thoughts as potential patient if the inclusion criteria change. You are correct that there are some positive changes for some of the children.
Please feel free to contact me any time to see if there are any updates or changes. If anything new becomes available from next week’s Mitochondrial Disease Foundation Meeting in Chicago, I will let you know.
2 comments:
interesting! thanks for sharing! i really should email Pam and ask her what hers and Sanetos thoughts are on Abigail being in the study... it would be interesting to manage all of the visits to Seattle though.. :p like you said.. It is all in God's hands and His timing, etc! :)
Thanks for sharing Debbie. Im keeping a close eye on this. I do think once more kids are on it and they see more positive results, they will change the criteria at some point. Ive pretty much given up the thought that Jack would qualify at this point! But cant wait to hear what is said at the symposium. Thanks again-
Heidi & Jack.
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