Affiliation:
1. Department of Endocrine Surgery, Peninsula Private Hospital and Department of Epidemiology and Preventive Medicine, Monash University , Melbourne, Victoria 3800 , Australia
2. Department of Epidemiology and Preventive Medicine, Monash University , Melbourne, Victoria 3800 , Australia
3. Department of Breast, Endocrine and General Surgery, Alfred Health, Monash University , Melbourne, Victoria 3800 , Australia
Abstract
Abstract
Context
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.
Objective
This review aims to identify, compare, and contrast active registries worldwide that capture data relevant to hereditary endocrine tumors (HETs).
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 tumors, clinical registries, and English language. Exclusion criteria were institutional audits, absence of clinical data, or inactivity. 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.
Conclusion
There are few clinical registries specific to HET. Most of these are European, and the data collected are highly variable. Further research into their effectiveness is warranted. We note the absence of an Australian registry for all HET, which would provide potential health and economic gains. This review presents a unique opportunity to harmonize registry data for HET locally and further afield.
Subject
Endocrinology, Diabetes and Metabolism