Recruiting Newly-Diagnosed T1 Patients for Studies
I am interested in hearing from doctors, nurses, parents and patients about ideas on how to recruit newly-diagnosed Type 1 diabetics (first ten weeks) for research studies. How can these folks be recruited even while they are dealing with the shock and confusion of the diagnosis? What would help the doctors and nurses feel comfortable asking for the patient to volunteer so soon after diagnosis? How can we get the patient/parent to volunteer so quickly?
I would also like to hear from parents what they have learned since those early days that they wish someone had told them early on. What do you wish someone had told you?
As I'm sure you understand, this is a delicate issues, especially for parents of a newly diagnosed child. Our son was dx while we were on vacation in Orlando, and the hospital there simply included a brochure on a couple of studies. When we went to our first Ped Endo appointment back home, our doc mentioned the Panda Study, described what the study was for, and gave us a flyer. There was no pressure at all, just passing along information. But, that particular study is not time-sensitive; it primarily gathers data about siblings and family members, and long term effects.
My recommendation is to NOT approach parents at the hospital when they are dealing with a new dx. There is just TOO MUCH overwhelm going on at that time. Include study information in the package of info they are given. The first follow-up appt with the Endo would be a better time to talk about participating in a study.
I think it is too much for the hospital visit when the child is diagnosed, but my husband and I were very interested in the studies and found it hard to get any information on anything going on at the time. We got a brochure from our endo, but once we started searching the internet, everything was too complicated. I think a follow-up phone call a week or two after diagnosis from "someone who cares" might just get some interest. We all feel so alone in the first month, a call with some direction and more information would be welcome. This is where some parent volunteers that have been through this would be good to get the word out. Alot of parents feel the need to help others once they have been through this...........