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@californiazebra definitely understudied. I am told it’s believed to be more widespread than originally thought. It also seems to be more researched in Europe than the U.S. I suspect there is a genetic component as well, but we will see what Dr. Merrick’s study shows. I think a big problem is that DIPNECH does not have its own diagnosis, making it difficult to track.

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Replies to "@californiazebra definitely understudied. I am told it’s believed to be more widespread than originally thought. It..."

@nvent5
I didn’t know that, but you’re right. I just looked it up and DIPNECH is tracked under “other lung disorders” and “other neuroendocrine” catch all diagnosis codes. That’s a problem and I hope it changes soon.