A full year since I met Anna at T1DExchange and shared with her the vision to try to end, halt, or even slow down the missed diagnosis of T1D. I needed help. She listened, she asked a million questions.
I shared my town hall meeting survey with my questions. “It’s not official, they were just from me as a dad. It has to be better. The numbers have to be real, they need an IRB. Mine was just to prove a point.” We need questions that can paint this picture accurately and with the seal of approval of an IRB.
Anna asked a million more questions and assured me that we had her attention. I just heard from her today and I can share with you now that the T1DExchange/GLU have developed a series of questions, submitted for an Institutional Review Board approval and today I was informed of that approval which has now been confirmed and granted.
What is an IRB? From Wikipedia: An institutional review board (IRB), also known as an independent ethics committee (IEC), ethical review board (ERB), or research ethics board (REB), is a type of committee used in research in the United States that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans. They often conduct some form of risk-benefit analysis in an attempt to determine whether or not research should be done.
This means that with T1DExchange/GLU behind the survey with IRB approval, we may have an incredible set of national (and even international) numbers (thousands in fact) that the world can point to and say, “Look, there is a problem.” The survey will be released shortly to capture incredible numbers.
This took a great deal of work and I’m humbled and thankful by both the efforts of Anna and Dr. Henry and everyone at T1DExchange in taking a concept (read the town hall survey results here) and also turning it into what can become one of the most comprehensive surveys to capture real numbers on the missed diagnosis of T1D ever assembled. We can hope for that, and I will.
Onward, we will make a difference.
And as excited as I am about this, every face that I have seen in this battle who we have lost come before me; and they remind me how we started, why we started, and why we all must make sure that this is stopped.
Stay tuned, as we will need much help spreading the word for the survey to be filled out; once released.
Photo Credit: Michal Jarmoluk, Pixabay and Jake Hills, Unsplash