ENETS Database

ENETS has set up a European academic database for patients with neuroendocrine tumors (NET) called the ENETS European NET Database (“ENETS DB”), which is designed to enhance and foster multi-center, multinational investigations on diagnostic-therapeutic management of patients with NEN.

The aim of the project is to create a platform that allows the retrospective and prospective collection of clinical data from affected patients.

Aims of the ENETS DB

The new ENETS DB allows the acquisition of information on NET patients for the:

  • documentation and analysis of diagnostic and therapeutic processes in the different European health care systems
  • promotion of quality control in diagnostics and therapy
  • scientific analysis of long-term morbidity and mortality
  • evaluation of epidemiological questions (age distribution and duration of disease) as well as evaluation of prognostic factors and therapeutic success
  • hypothesis driven data analysis
  • implementation of observational studies for data collection and analysis
  • identification of patients who are eligible for prospective ENETS studies.

ENETS provides alongside this NET database an organised system that uses observational study methods to collect uniform, consistent, and high-quality data to evaluate specified outcomes for a population defined by the presence of NEN disease.

The ENETS DB provides a basis for improving and promoting multicenter, multinational studies to collect and provide information on diagnostics and the efficacy and safety of therapeutic strategies for the care or treatment of NET. In addition, the database enables the promotion of quality control in diagnostics and therapy as well as scientific investigation on the epidemiology of NET. All requests for study and  hypothesis driven data analysis will be revised by a scientific committee.

Who may participate?

The ENETS DB is part of the European Neuroendocrine Tumor Society (ENETS). The ENETS DB co-operates with NEN referral centers at the level of ENETS Centers of Excellence (CoE). These centers become ENETS DB collaboration partners and are required to sign an ENETS DB collaboration agreement.

The following accreditations/certifications are required so that centers to qualify as collaborating partners of the ENETS DB:

  • ENETS certified NEN Center of Excellence (ENETS CoE) or other
  • ERN-EURACAN (rare cancer network) accredited NEN referral centers
  • NEN referral centers that are accredited by national authorities.

In order to apply to the ENETS DB, please download the database access request form / register here: