Epidemiology of Endometriosis in the Adolescent Population

Date of ISAC Approval: 
13/03/2019
Lay Summary: 
Endometriosis is a disease, usually diagnosed in women 25-35 years of age, where the tissue that makes up the uterine lining (the lining of the womb) is found on other organs inside your body. Endometriosis can cause chronic pain and infertility. The number of adolescent patients with endometriosis, as well as the number of adolescent patients newly diagnosed with endometriosis each year, have been measured by researchers in different countries. However, these researchers have used different age ranges for the adolescent age group as well as different definitions for endometriosis. This study will use the Clinical Practice Research Datalink (CPRD) from 2006-2016 as well as linked hospital episode statistics data (HES) to estimate the number of adolescent patients 10-17 years of age diagnosed with endometriosis, as well as the number of adolescent patients newly diagnosed with endometriosis, each year. This study will help researchers and public health officials understand the burden of disease associated with endometriosis in the adolescent population in the UK.
Technical Summary: 
Endometriosis is an inflammatory, chronic, progressive disease defined by the presence of endometrial glands and stroma outside of the uterus. The prevalence and incidence of endometriosis in the adolescent population has been reported in a number of population based on epidemiologic studies in the published literature. Prevalence and incidence estimates likely vary across studies in the published literature due to differing age ranges for the adolescent age group, varying case definitions (some studies required surgical confirmation of endometriosis while others did not), varying medical practice across countries, and differences in study time periods. This retrospective cohort study will build upon the findings from a recent study in the UK population and will extend these findings to estimate the incidence and prevalence, and associated 95% confidence intervals, of endometriosis (with and without surgical confirmation) within a population-based sample of UK adolescents age 10-17 years of age. This study will include participants enrolled in the Clinical Practice Research Datalink (CPRD) during the study period of 2006-2016. Additionally, for the primary objective, hospital episode statistics data (HES) will be linked to the CPRD for eligible patients and will be used to provide surgical evidence supportive of an endometriosis diagnosis.
Health Outcomes to be Measured: 
Prevalence and incidence of surgically confirmed endometriosis in UK adolescents; Prevalence and incidence of diagnosed endometriosis (with and without surgical confirmation) in UK adolescents; Prevalence of surgeries during which endometriosis could be visualized in the UK general adolescent population.
Collaborators: 

Julia DiBello - Chief Investigator - Merck & Co., Inc.
Dr Felipe Arbelaez Casas - Collaborator - Merck & Co., Inc.
Ms Jessica Weaver - Collaborator - Merck & Co., Inc.
Jinghua He - Collaborator - Merck & Co., Inc.
Julia DiBello - Corresponding Applicant - Merck & Co., Inc.
Mr Shawn Moylan - Collaborator - Merck & Co., Inc.

Linkages: 
HES Admitted