When this study first came out I thought it was super cool. I was excited to be a part of it. And then I found out that I couldn’t. All because I have Indeterminate Colitis. Which means I’m showing signs of both Crohn’s Disease and Ulcerative Colitis.
I just would of thought that DNA from people would be useful. Maybe Indeterminate Colitis is actually another form of IBD. I want to know what makes me different from people with Crohn’s Disease and Ulcerative Colitis.
My request to 23 & Me:
I’ve asked a few times on Twitter why Indeterminate Colitis isn’t a part of the Inflammatory Bowel Disease research that you are currently doing. Up to 15% of people with IBD are diagnosed with Indeterminate Colitis and have a 50/50 chance of ever being diagnosed with Crohn’s Disease or Ulcerative Colitis. There are times people with Indeterminate Colitis have that diagnosis for the rest of their lives.
Wouldn’t this DNA be helpful to the research initiative? I have Indeterminate Colitis and I’m curious as to what makes me different from people who have Crohn’s Disease and Ulcerative Colitis. What if people with Indeterminate Colitis have another form of Inflammatory Bowel Disease that hasn’t had enough light shed on it? Why is it that people with Indeterminate Colitis don’t matter?
23 & Me’s Reply:
Thank you for your interest in the 23andMe IBD study. Since funding for this study is limited, we have currently limited enrollment to participants who have received a diagnosis of Crohn’s disease or ulcerative colitis in order to ensure the quality of our research.
We regret that we are not able to accept participants with indeterminate colitis into our study, but we will be sure to advertise if we ever expand our research to include this diagnosis. Once again, thank you for your interest and support for our research on IBD.
If you have any questions, please feel free to email us at firstname.lastname@example.org anytime.
The 23andMe Research Team
It sucks that this isn’t being done. I really hope that one day that they will be able to some research with people who have indeterminate colitis. I hope that one day it becomes more recognized as a diagnosis of IBD. Even if it does eventually get changed to Crohn’s Disease or Ulcerative Colitis. My insurance company doesn’t even recognize it. I have to be listed as Crohn’s Disease because it’s easier to get meds at that point.