I was approached in the past about a research study regarding Abby's diagnosis. I was very excited to hear about such research and I looked into it. What I found out was that the primary focus of the research is a syndrome associated with RS that Abby does not have. The research could eventually gravitate to something relevant to us but it wouldn't be for a long time. I explained that while I was okay with simple chart reviews or medical history information I was not willing to subject her to any more tests or anything. This seemed fair.
They sent me a kit to collect saliva from the girls and blood from Brian and I. Unfortunately it was up to us to figure out how to collect it and send it back... seemed like a lot of work. So, I kind of let it go. Until this week when the head of the research study called. He just wanted to follow up and see where we are at. I know it isn't a big deal but when I think about the cost - benefit ratio it isn't that great for us. We can take some effort to further research that likely won't do a darn bit of good for Abby. Is it worth it? Should we put in the effort? Right now we have a lot on our plate. We feel in a little over our heads so we are just trying to let things like this simmer on the back burner.
I do feel like I owe it to the researcher to tell him we're in or out.
You have to do whats right for you guys right now. But you also need to let them know where you're at with it. I'm guessing they dont have a huge pool of people to participate.
ReplyDeleteOften research branches out and finds links where they were not expected, so this could end up being a benefit. Plus if you do this, you could be helping another family who is struggling. But only do it if its not going to be too overwhelming. You have tons on your plate and anyone would understand.
S - That is a good point. I guess I need to stop focusing on what it could do for us and focus on what it could do period.
ReplyDeleteIs this the one In Washington State? We are due on Nov 2nd had have been diagnosed with RS. Your posts have help me prepare along with Doctors best opinions. Thank you. Jason
ReplyDeleteJason - Yes, that's the one. :D
ReplyDeleteLet me know if there is anything specific I can answer or blog about. I was hoping by blogging about it more information would be out there.