The NIH announced today that it is launching its “Undiagnosed Diseases Program”. This program will evaluate patients who are referred by physicians. They will also ask for input from so-called advocacy groups.
This should be interesting. I’m sure they will be receiving requests from people with “chronic Lyme disase”, “Morgellons syndrome”, and “chronic fatigue syndrome”. From what I can tell from reading the press release, the program is aimed at the individual patient, and is does not focus on epidemiology. This has it’s pluses and minuses. The individual patient is the smallest “unit” of disease, and for very rare diseases, sometimes one patient is all you can find. On the other hand, it is more common to see an odd variant of a common disease, than a brand new strange disease.
The other interesting bit is that this counts on doctors to refer patients. Will regular docs like me do most of the referring? Or will it be docs that are aligned with “advocacy groups” who practice at the “outer limits” of medicine?
Either way, they will only be evaluating a handful of patients yearly. It will be interesting to follow their progress. Hopefully they will find a good way of reporting their findings.