As patients, most of us have experienced the frustration of a delayed diagnosis. Our recent small survey again illustrated this problem as only 8% of respondents reported being diagnosed after seeing just one medical professional. We also found that the medical professional you thought could have first considered Cushing’s as a diagnosis, spans the realm of General Practitioners, Endocrinologists and many other specialties (see figure).

As patients, I think we all recognize that education of medical professionals is desperately needed in regards to Cushing’s. The CSRF would like to make generation of a Continuing Medical Education (CME) program aimed at non-endocrinologists a priority. Medical professionals are required to take a certain number of CME’s over a period of time to keep their licenses current. Such CME programs are overseen by organizations that can review and accredit the program. This will likely be a long term and expensive project that will require substantial grant funding. Justification of such a grant will require that we show the need for such a program. In our opinion, information on the need is best gathered by patient experiences. The CSRF was thrilled to see that Dr. Kreitschmann-Andermahr investigated this delay in Germany. It is unknown at this point if the work done in Germany directly translates to other medical systems. By working with her group, the CSRF hopes to gather additional diagnosis information in the US and other countries, which can be used to support the need for medical professional education. At this point, we do not know when we will be able to conduct this survey, but PLEASE do participate when the time comes!