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Epidemiological Surveillance of Pituitary Tumours within Endo-ERN

It is of significant importance to evaluate the incidence rates and demographics of patients with rare endocrine conditions that are seen by Reference Centers across Europe. Firstly, this data provides high quality insight into the knowledge on the natural history of (ultra-)rare conditions, for which data is scarce. Secondly, potential regional specific differences in the epidemiology of these conditions can be detected. Finally, the evaluation of incidence rates found through the e-REC registration can be compared with the Continuous Monitoring Exercise data, and other national and international registries and database, thus allowing the functionality and accessibility of the Endo-ERN network to be evaluated.  

By collecting characteristics of the Reference Centers and other centers that are reporting, and some basic characteristics of national health profiles, potential imperfections and/or hurdles regarding the full extent of the registering process can be exploratively reviewed. Hypothesized imperfections and/or hurdles could be categorized as 1) under diagnosis, 2) under registration, and 3) lack of uniformity in diagnosis. 

Objective

The primary aim is to describe the epidemiology and demographics of patients with pituitary tumours seen at Endo-ERN Reference Centers and the clinical activity of Centers endorsed in Endo-ERN. The secondary aim is to map the functionality and accessibility of the Endo-ERN network in the field of pituitary tumours. 

Primary outcomes

Incidence rates per 100.000 persons per country.

Secondary outcomes  

  • Demographics per condition (age at diagnosis, male/female ratio, time between first clinical symptoms and diagnosis, time between first visit in Reference Center and diagnosis, diagnostic modalities that contributed to the diagnosis).  
  • Associations between characteristics of the Reference Centers as well as their reporting process and the incidence rates found 
  • Associations between collected items of the National Health Profiles and the incidence rates found 

Members of this Study Group

Name(s) Expertise / Role Organisation
Lead: Alberto Pereira endocrinologist, Endo-ERN Coordinator Amsterdam University  Medical Center 
Dirk Jan Stenvers  endocrinologist Amsterdam University  Medical Center 
Loren van der Hoeven  endocrinologist Amsterdam University  Medical Center 
Emily White Endo-ERN Project Manager & Operational Helpdesk Manager  Amsterdam University  Medical CenterÂ