Late March and early April was a busy and exciting time for the CSRF! From March 29 -31, 2017, President Louise Pace, John Gulielmetti and Karen Campbell attended the Pituitary Congress. We had a display table outside the meeting room and our newsletters were well received. The Pituitary Congress gathers top notch physicians and researchers interested in all aspects of pituitary disease from all parts of the world. As patients, we are indebted to these wonderful physicians who have advanced the understanding of pituitary disease and continue to make great progress in furthering research and treatment options.

Over the course of the meeting, many interesting talks and posters were presented. It is highly encouraging to see multiple researchers involved in unraveling the genetics of pituitary tumors causing Cushing’s. While some studies are basic research at this point, it should give us hope that future treatments will become available. Other presentations focused on currently available medications to treat Cushing’s as well as those in clinical trials and on the horizon.

Several other items were of high interest from the perspective of Cushing’s. China established the China Pituitary Disease Register Network in 2015. Thus far, they have compiled more than 11,000 cases, of which 1600 cases were Cushing’s. Wow!

Dr. Brooke Swearingen (Mass General Hospital) gave an excellent presentation on the importance of an expert pituitary surgeon to decrease complications and preserve pituitary function. During his presentation, Dr. Swearingen pointed out that different countries have different ways of dealing with pituitary patients. For example, in Germany 2 surgeons are present for each pituitary surgery, which means that these surgeons develop a great deal of expertise and have a high case volume. In contrast, in the US, while the most experienced surgeons at specialty centers have a great deal of expertise and a high case volume, a number of surgeons who do surgeries outside of these centers have a very low case volume. This talk was directly related to two talks discussing Criteria for Establishing Pituitary Centers of Excellence. In 2012, a publication by Drs. McLaughlin, Laws, Oyesiku, Katznelson, and Kelly in Neurosurgery (1) suggested that Centers of Excellence be established to provide enhanced patient care and outcomes. The Pituitary Society gathered international experts and formed a Steering Committee to define what criteria these centers should meet. This was the subject of discussion at this meeting and the criteria will be reevaluated in light of the discussion and comments received by email.

If you are interested in any of the abstracts, you can read them on the Pituitary Society website under meetings.

L-R: Meg Keil, Louise Pace, Dr. Andre Lacroix, Karen Campbell and Leslie Edwin at ENDO 2017

From April 1-3, the CSRF had a booth on the exhibit floor of Endo2017, the annual meeting of the Endocrine Society. Leslie Edwin joined Louise, John and Karen in the booth. Again, there were many excellent presentations and poster sessions. One interesting session, chaired by Dr. Lynnette Nieman of NIH, was titled Beyond the Guidelines: Challenging Cushing’s Patients. This session presented two case studies that pointed out the difficulties associated with complicated cases. The first case was a patient with a cyclic ectopic tumor. An IPSS test was done during a low cycle and was considered a false positive IPSS test indicating the possibility of a pituitary tumor. The second case illustrated the differences in approach for patients in a critical care situation where it is vastly important to immediately treat comorbidities and decrease cortisol levels quickly. This session was extremely well attended.

One question the CSRF hears often is how do I approach a doctor that I am seeing for the first time when hoping for a diagnosis and to be taken seriously?. To this point, Dr. Johnathan Leffert, President of the AACE held a Meet the Professor session where attendees were encouraged to treat patients with respect. He also pointed out the difference between research that patients generally do using the web and the rigor of scientific studies reported in peer reviewed medical literature. Web-based materials often contain erroneous or incomplete information. The CSRF has made every effort to ensure that the materials on our website are of the highest quality as they are written by physicians.

If you are interested in the abstracts from Endo 2017, you can read them on the Endocrine Society website under meetings.

1. Pituitary centers of excellence, McLaughlin N, Laws ER, Oyesiku NM, Katznelson L, Kelly DF. Neurosurgery. 2012 Nov;71(5):916-24; discussion 924-6.



Summer 2017