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. Author manuscript; available in PMC: 2017 Mar 8.
Published in final edited form as: Epidemiology. 2016 May;27(3):438–448. doi: 10.1097/EDE.0000000000000456

Table 1.

Collection of Questionnaire and Clinical Data and Biospecimens at Baseline and Follow-up, LEGACY Girls Study, 2011 – 2015

Participants Baseline F1a F2 a F3 a F4 a F5 a F6 a F7 a
Mothers Growth and Development b Growth and Development Growth and Development Growth and Development Growth and Development Growth and Development Growth and Development Growth and Development
Behavioral Questionnaire c Behavioral Questionnaire Behavioral Questionnaire Behavioral Questionnaire
Cancer Family History d
Update on Cancer Family History: In year 5 of the study
Early-life Questionnaire e Update on Home Environment and Medical History f Update on Home Environment and Medical History Update on Home Environment and Medical History
History of Chronic Conditions
Recent Physical Activity g Recent Physical Activity Recent Physical Activity Recent Physical Activity
Recent Dietary Intake h Recent Dietary Intake Recent Dietary Intake Recent Dietary Intake
Nutritioni Nutrition
Neighborhood Characteristics j Neighborhood Characteristics
Cosmetics Cosmetics
Physical and Social Environmentk Physical and Social Environment
Medical History and Infections
Saliva sample l
Daughters ages ≥10 years Growth and Development b Growth and Development Growth and Development Growth and Development Growth and Development Growth and Development Growth and Development Growth and Development
Recent Physical Activity g Recent Physical Activity Recent Physical Activity Recent Physical Activity
Recent Dietary Intake h Recent Dietary Intake Recent Dietary Intake Recent Dietary Intake
Nutritioni Nutrition
Neighborhood Characteristics j Neighborhood Characteristics
Cosmetics Cosmetics
Social Environment m Social Environment
Behavioral Questionnaire n Behavioral Questionnaire Behavioral Questionnaire Behavioral Questionnaire
Optical Spectroscopy Measurements: In year 5 of the study
Daughters of all ages Anthropometryo Anthropometry Anthropometry Anthropometry Anthropometry Anthropometry Anthropometry Anthropometry
Clinical Breast Tanner Staging p Clinical Breast Tanner Staging Clinical Breast Tanner Staging Clinical Breast Tanner Staging Clinical Breast Tanner Staging Clinical Breast Tanner Staging Clinical Breast Tanner Staging Clinical Breast Tanner Staging
Urine Sample Urine Sample Urine Sample Urine Sample Urine Sample Urine Sample Urine Sample Urine Sample
Non-fasting Blood or Saliva Sample Fasting Blood or Saliva Sample Fasting Blood Sample Fasting Blood Sample Fasting Blood Sample
a

F1: Follow-up 1 at 6 months; F2: Follow-up 2 at 12 months; F3: Follow-up 3 at 18 months; F4: Follow-up 4 at 24 months; F5: Follow-up 5 at 30 months; F6: Follow-up 6 at 36 months; F7: Follow-up 7 at 42 months.

b

Growth and Development: Signs of puberty (growth spurt, body hair, breast development, skin changes); menses; Tanner stage of breast and pubic hair development; comparative body size (height, weight) currently and at age 6 years; current body shape (drawing).

c

Behavioral Questionnaire: Daughter’s psychosocial adjustment; maternal anxiety, depression, breast cancer-specific distress, perceived stress, knowledge and perceptions of breast cancer risk, breast cancer and genetic testing experiences, family functioning and communication and health behaviors.

d

Cancer Family History: Cancer in daughter’s 1st, 2nd, and 3rd degree relatives; familial relationship, type of cancer diagnosed, age at diagnosis.

e

Early-life Questionnaire: Daughter’s demographic background; parents’ background (demographics, income, occupation, country of birth, migration to US/Canada, language); parents’ height; parents’ physical activity; grandparents’ country of birth; home environment (primary residence, language spoken, household composition); siblings (Age, gender, age at menarche for sisters); pregnancy and birth outcomes (weight gain, physical activity, smoking, alcohol consumption, use of prenatal vitamins, duration of pregnancy, medical conditions, birth weight and length, breast-feeding); medical history (medication use, medical conditions, chronic conditions); daughter’s physical activity level at ages 3–5 years; lifetime history of organized sports and exercise activities.

f

Update on Home Environment and Medical History: Home environment; parents’ occupation; medical history.

g

Recent Physical Activity: Physical education (PE) at school, transportation to school, organized sports and activities in past year, organized sports and activities in past week, other physical activities in past week, sedentary activities and sleeping on prior day.

h

Recent Dietary Intake: Food Frequency Questionnaire on intake in past week (frequency, portion size).

i

Nutrition: Intake of organic food, soy food, fast-food and restaurant food, family meals, special diet.

j

Neighborhood Characteristics: Type of housing, walkability, safety, availability of healthy foods.

k

Physical and Social Environment: Chemical exposure in home and community environment; attitudes about daily life; place in society.

l

Saliva: Collected unless DNA is already available in the Breast Cancer Family Registry biorepositories.

m

Social Environment: Place in society; future hopes.

n

Behavioral Questionnaire: Daughter’s psychosocial adjustment, breast cancer-specific distress, perceived stress, knowledge and perceptions of breast cancer risk, breast cancer experiences, family functioning and communication, health and risk behaviors.

o

Anthropometry: Standing height, weight, percent body fat, waist and hip circumference, foot size.

p

Clinical Breast Tanner Staging: Performed at New York and Utah study sites only.