Hereditary Endocrine Tumor Registries

Abstract

Introduction and hypothesis Endocrine neoplasia syndromes are phenotypically complex and there is a misconception that they are universally rare. Genetic alterations are increasingly recognized, however true prevalence is unknown. The purpose of a clinical registry is to monitor the quality of health care delivered to a specified group of patients through the collection, analysis and reporting of relevant health-related information. This leads to improved clinical practice, decision making, patient satisfaction and outcome. This review aims to identify, compare and contrasts active registries worldwide that capture data relevant to HET (hereditary endocrine tumours). Methods Clinical registries were identified using a systematic approach from publications (Ovid MEDLINE, EMBASE) peer consultation, clinical trials and web searches. Inclusion criteria were hereditary endocrine tumours, clinical registries and English language. Exclusion criteria were institutional audits, absence of clinical data or inactive. Details surrounding general characteristics, funding, data fields, collection periods and entry methods were collated. Results Fifteen registries specific for HET were shortlisted with 136 affiliated peer reviewed manuscripts. Conclusions There are few clinical registries specific to HET. Most of these are European and the data collected is highly variable. Further research into their effectiveness is warranted. We note the absence of an Australian registry for all HET, where potential health and economic gains may be possible. This review presents a unique opportunity to harmonize registry data for HET locally and further afield.