An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria

Abstract

<jats:sec> <jats:title>Objective</jats:title> <jats:p>Given that volumes of patients and interventions are important criteria to qualify as a reference centre (RC) for the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the present study aimed to evaluate the data that were reported in the original application against subsequent assessments of activity and review the criteria that may define RCs using two main thematic groups (MTGs): Pituitary and Thyroid, as examples.</jats:p> </jats:sec> <jats:sec> <jats:title>Methods</jats:title> <jats:p>Review of content in application forms and continuous monitoring data and of a survey distributed to RCs. A list of ‘key procedures’ for the assessment of performance of RCs was composed with the help of the Pituitary and Thyroid MTG chairs.</jats:p> </jats:sec> <jats:sec> <jats:title>Results</jats:title> <jats:p>In the original application, the number of undefined procedures ranged from 20 to 5500/year (Pituitary) and from 10 to 2700/year (phyroid) between applicants. In the survey, the number of key procedures per centre ranged from 18 to 150/year (Pituitary) and from 20 to 1376/year (Thyroid). The median numbers of new patients reported in the continuous monitoring program were comparable with the application and survey; however, some centres reported large variations.</jats:p> </jats:sec> <jats:sec> <jats:title>Conclusions</jats:title> <jats:p>Monitoring of clinical activity in an ERN requires clear definitions that are optimally aligned with clinical practice, diagnosis registration, and hospital IT systems. This is a particular challenge in the rare disease field where the centre may also provide expert input in collaboration with local hospitals. Application of uniform definitions, in addition to condition-specific clinical benchmarks, which can include patient-reported- as well as clinician-reported outcome measures, is urgently needed to allow benchmarking of care across Endo-ERN.</jats:p> </jats:sec>

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

“…In adults, almost half of total reported cases were pituitary conditions with pituitary adenomas comprising 70% of these reported cases. These data are similar to those reported by Endo-ERN in 2018 in an internal exercise ( 12 ). However, challenges still exist in estimating the prevalence of pituitary adenomas and wide variation has been reported ( 13 , 14 ).…”

Tackling Thyroid Cancer in Europe—The Challenges and Opportunities

“…It is necessary to educate physicians in working across disciplines and promote a corresponding change in attitudes. European Reference Networks are already demonstrating their potential in this area and the current review of their evolution should reinforce their capacity [ 57 , 58 ].…”

Guideline Adherence and Registry Recruitment of Congenital Primary Hypothyroidism: Data from the German Registry for Congenital Hypothyroidism (HypoDok)

“…One example is the European initiative of European Reference Networks (ERN) for different specialities like Endo-ERN for rare endocrine conditions in order to share knowledge to assure and maintain high level of patient care across Europe. As part of this initiative, patient cohort documentation in databases in the case of rare diseases such as CH is important to ensure structural quality [32,33]. In this context it would be additionally helpful to create a network of accredited regional centers for comprehensive CH management in childhood, closely linked to neonatal screening centers and primary care pediatricians.…”