The LEGACY Girls Study

Abstract

Background Although the timing of pubertal milestones has been associated with breast cancer risk, few studies of girls’ development include girls at increased breast cancer risk due to their family history. Methods The LEGACY (Lessons in Epidemiology and Genetics of Adult Cancer from Youth) Girls Study was initiated in 2011 in the USA and Canada to assess the relation between early-life exposures and intermediate markers of breast cancer risk (e.g., pubertal development, breast tissue characteristics) and to investigate psychosocial well-being and health behaviors in the context of family history. We describe the methods used to establish and follow a cohort of 1,040 girls ages 6–13 years at baseline, half with a breast cancer family history, and the collection of questionnaire data (family history, early-life exposures, growth and development, psychosocial and behavioral), anthropometry, biospecimens, and breast tissue characteristics using optical spectroscopy. Results During this initial 5-year phase of the study, follow-up visits are conducted every six months for repeated data and biospecimen collection. Participation in baseline components was high (98% for urine, 97.5% for blood or saliva, and 98% for anthropometry). At enrollment, 77% of girls were pre-menarcheal and 49% were at breast Tanner stage T1. Conclusions This study design allows thorough examination of events affecting girls’ growth and development and how they differ across the spectrum of breast cancer risk. A better understanding of early-life breast cancer risk factors will be essential to enhance prevention across the lifespan for those with and without a family history of the disease.

Non-invasive optical spectroscopic monitoring of breast development during puberty

“…The participants in this study were from the Ontario site of the LEGACY girls study [ 17 ], an NCI-funded prospective cohort of 1040 girls enrolled at ages 6–13 years at five study sites in the US and Canada. Half of the girls come from families with positive BC history (BCFH+) defined as having at least one first or second degree relative diagnosed with BC.…”

“…Girls without a breast cancer family history (BCFH-) had no first or second degree relative with BC. All participating institutions obtained Institutional Review Board approval (for more details see [ 17 ] and www.legacygirlstudy.org ).…”

Association of Prepubertal and Adolescent Androgen Concentrations With Timing of Breast Development and Family History of Breast Cancer

“…Using the New York site of the Lessons in Epidemiology and Genetics of Adult Cancer From Youth (LEGACY) Girls Study, a prospective cohort, we examined girls aged 6 to 13 years at baseline and monitored them longitudinally for pubertal development. 15 We established the cohort in 2011 with continued follow-up. We conducted the present analysis in 2017 using data collected between August 16, 2011, and March 24, 2016.…”

Comparison of methods to assess onset of breast development in the LEGACY Girls Study: methodological considerations for studies of breast cancer

“…The LEGACY Girls Study is a five-site study of pubertal development in 1040 girls ages 6–13 years at recruitment, half of whom have a family history of breast cancer ( for details, see [ 19 , 20 ]). Prior validation studies have not been conducted in cohorts enriched with individuals who have a family history of breast cancer.…”

“…Mothers/guardians for girls of all ages and girls aged 10 years or older completed the questionnaire every 6 months. Because 97% of girls participated with their biological mother [ 19 ], we refer to them as the mother for the remainder of the paper. For the purpose of this study, we used the first available mother reports of breast onset.…”