2020

1. IDENTIFICATION & BASIC DESCRIPTION Cohort name   Sister Study Country   United States Please provide any other information on the cohort location/s if needed   all states represented; includes Puerto Rico Name   Dale Sandler Institution   National Institute of Environmental Health Sciences Email   sandler@niehs.nih.gov Personal website   https://www.niehs.nih.gov/research/atniehs/labs/epi/pi/chronic/index.cfm Website   https://sisterstudy.niehs.nih.gov/ Name of committee   National Institute of Health Upload files   EHP1923.pdf Or provide website   https://sisterstudy.niehs.nih.gov/English/enroll-data.htm Contact Principal Investigator (name)   Dale Sandler Data access policy (briefly describe)   Individuals can apply to use the data via https://www.sisterstudystars.org/. We also advise talking with the Principal Investigator (Dale Sandler) before submitting. Is this cohort part of a consortium? (name consortium)   Premenopausal Breast Cancer Collaborative Group, Ovarian Cancer Cohort Consortium, others Main aim of cohort, please briefly describe the main objectives of the cohort   The Sister Study is the only long-term study in the United States and Puerto Rico of women ages 35 to 74 whose sisters had breast cancer. This important study is conducted by the National Institute of Environmental Health Sciences (NIEHS), one of the National Institutes of Health. The study will follow 50,000 women for at least 10 years to learn how environment and genes may affect the chances of getting breast cancer and other chronic diseases.. Study design (please select as many as appropriate)   Prospective cohort Source population (please select as many as appropriate)   General population: National Comparators (please select as many as appropriate)   Internal study population Inclusion criteria   ages 35-74, living in the US, had a sister with breast cancer Exclusion criteria   personal history of breast cancer Enrollment   Completed Age range at entry (main cohort)   Minimum Maximum Mean 35 74 56 Age range at entry (subcohort)   Minimum Maximum Mean Please describe 35 74 56 random sample has genetic, epigenetic and other data available Men at enrollment   0 Women at enrollment   50884 Children (<18 years) at enrollment   0 Men at last follow-up   0 Women at last follow-up   47000 Children (<18 years) at last follow-up   0 2. OUTCOME FOLLOW-UP Type of data for outcome follow-up (please select as many as appropriate)   Active (contact with participants) Death certificate Use of registers (specify) Active (contact with participants) (specify)   annual health updates plus detailed follow-ups every 2-3 years Death certificate (specify)   National Death Index searches Specify: Use of registers   currently in pilot program to match with many state cancer registries First follow-up period (provide year)   2008 Last follow-up period (provide year)   2021 Number of follow-ups after baseline (provide number)   5 Participation at last follow-up (if known)   90 3. OCCUPATIONAL EXPOSURES Source of exposure data collected (please select as many as appropriate)   Questionnaire, Personal (Self-reporting or interview) Questionnaire, Personal (Occupational/industry modules) Occupational history/time frame   Lifetime Occupational coding performed   Yes Occupation (specify coding system used)   Industry and Occupation Coding for Death Certificates, effective 2003, NIOSH Industry (specify coding system used)   Industry and Occupation Coding for Death Certificates, effective 2003, NIOSH Types of exposure measurements   Biomarkers (see also section 5) Other (specify) Specify: Other   self-report for specific exposures Methods for exposure assessment (please select as many as appropriate)   GIS (other spatial methods) Measurements (external sampling, biomarkers) Self-report Main categories   Dusts and fibres Solvents Pesticides Metals and metal oxides Other chemicals Biological factors Ergonomics, physical workload, and injury related Dusts and fibres | Fibres   Asbestos (any form of asbestos chrysotile, crocidolite, tremolite, anthophyllite, etc. or asbestos-containing material) Ceramic fibres Fibres (not specified) Glass wool Dusts and fibres | Organic dusts   Animal dust (from living animals or hairs of animals, e.g. raw wool, furs of minks, etc.) Flour dust Leather dust Textile dust Wood dust (not specified) Solvents | Aliphatic and alicyclic hydrocarbon solvents   Gasoline Hexane Solvent naphtha Turpentine Solvents | Aromatic hydrocarbon solvents   Benzene Creosotes Toluene Solvents | Chlorinated hydrocarbon solvents   Chloroform Methylene chloride Perchloroethylene Trichloroethylene Solvents | Organic solvents, other than aliphatic, aromatic and chlorinated   Alcohols Esters Formaldehyde Glycol ethers Ketones Pesticides | Fungicides   Other (specify) Pesticides | Fungicides | Specify: Other   ask about types but not by name Pesticides | Herbicides   Other (specify) Pesticides | Herbicides | Specify: Other   ask about types but not by name Pesticides | Other   Other Pesticides | Other | Specify: Other   ask about types but not by name Metals and metal oxides   Beryllium and all compounds Cadmium and all compounds Chromium (metallic chromium, Cr(iii), Cr(vi) and all compounds) Cobalt and all compounds Lead and all compounds Mercury, organic, inorganic Nickel and all compounds Other (specify) Metals and metal oxides | Specify: Other   antimony, arsenic Other chemicals | Anesthetic gases   Anesthetic gases Other chemicals | Detergents and cleaning products   Cleaning products Detergents Other chemicals | Dioxins and Furans   Dioxins and Furans (TCDD and other polychlorinated dioxins and furans) Other chemicals | Engine exhaust   Diesel engine exhaust Gasoline engine exhaust Other chemicals | Oil mist   Synthetic metal processing or drilling oils or fluids Other chemicals | Polycyclic aromatic hydrocarbons (PAHs)   Asphalt/Bitumen fumes Other chemicals | Welding fumes   Other (specify) Other chemicals | Welding fumes | Specify: Other   hobbies that involve welding Ergonomics, physical workload, and injury related   Physical work load (e.g. heavy lifting of people or objects, pushing/pulling) Sedentary work Other (specify) Ergonomics, physical workload, and injury related | Specify: Other   "usual physical activity while on the job" 4. OUTCOMES EVALUATED Baseline - type of outcome data collected (select more than one if applicable)   Biomarker (specify) Medical records Questionnaire, individual (self-recording or interview) Registry-based Registry-based   Cancer incidence Mortality register Follow-up - type of outcome data collected (select more than one if applicable)   Death certificates Questionnaire, individual (self-recording or interview) Registry-based Registry-based   Cancer incidence Mortality register Outcome type (please select as many as appropriate)   Mortality Morbidity Diagnostic groups based on ICD10   C + D Neoplasms D Diseases of blood and blood-forming organs excl. leukemia E Endocrinological disease E Malnutrition and obesity E Metabolism disease F Mental disorders G Disease in the nervous system H Disorders of the eye H Disorders of the ear I Heart disease I Cerebrovascular diseases J Respiratory disease K Diseases of oral cavity, salivary glands and jaws K Diseases of oesophagus, stomach, duodenum and appendix K Hernia, colon and intestine disease K Diseases of peritoneum, liver L Skin, nail and hair disorders M Arthritis, arthrosis, systemic connective disorders, spine disorders M Disorders of muscles, bones, synovialis, bursa, cartilage N Kidney, renal pelvis disease N Male and female related disorders C + D Neoplasms   Benign neoplasm Carcinoma in situ Leukemia Malignant neoplasms gastro intes. system including liver, gall bladder, pancreas Malignant neoplasm lung Mesothelioma Other malignant neoplasm of respiratory and intrathoracic organs, heart, pleura Malignant neoplasm of bone and articular cartilage Melanoma and other malignant neoplasms of skin Neoplasms connective and soft tissue including nerves Malignant neoplasm of breast Malignant neoplasms, females gynecological Malignant neoplasms of male genital organs Malignant neoplasm of urinary tract and kidney Malignant neoplasms of eye, brain and other parts of central nervous system Malignant neoplasms of thyroid and other endocrine glands Malignant neoplasms of ill-defined, secondary and unspecified sites Malignant neoplasm without specification of site including excl. leukemia Other, please state E Endocrinological disease   Thyroidea Parathyroidea Diabetes mellitus Other endocrinological disease E Malnutrition and obesity   Obesity E Metabolism disease   Hypercholesterolemia F Mental disorders   Dementia Depression Eating disorders G Disease in the nervous system   Parkinson's disease Alzheimer's disease Multiple sclerosis Sleep disorders H Disorders of the eye   Glaucoma I Heart disease   Hypertensive diseases Acute myocardial infarction Chronic ischaemic heart disease Pulmonary embolism Myocarditis Cardiomyopathy Heart failure I Cerebrovascular diseases   Subarachnoid haemorrhage Intracerebral haemorrhage Cerebral infarction Stroke, not specified as haemorrhage or infarction Atherosclerosis J Respiratory disease   Chronic Bronchitis Emphysema Chronic obstructive pulmonary disease (COPD) Asthma K Diseases of oral cavity, salivary glands and jaws   Gingivitis and periodontal diseases K Hernia, colon and intestine disease   Crohn's disease Ulcerative colitis Diverticular disease of intestine K Diseases of peritoneum, liver   Chronic hepatitis M Arthritis, arthrosis, systemic connective disorders, spine disorders   Rheumatoid arthritis Systemic lupus erythematosus M Disorders of muscles, bones, synovialis, bursa, cartilage   Osteoporosis N Male and female related disorders   Female pelvic inflammatory disease, unspecified Endometriosis Spontaneous abortion Comments   our primary interests are in cancer and other chronic diseases (e.g. CVD, autoimmune disease, thyroid disorders, etc.) but we have captured other outcomes as well. Participants could self-report many outcomes. 5. BIOLOGICAL SAMPLES & ANALYSIS Biological samples collected   Blood Nails Urine Other Specify: Other   house dust from current residence Biological processing   DNA Genetic and other lab analyses   Adductomics Biomarkers (specify) Epigenomics Genomics / GWAS Metabolomics Specify: Biomarkers   vitamin D, toenail metals 6. Other Information   Alcohol Anthropometry Demographics Diet Education Environmental, air pollution Environmental other (specify) Medical history Personality Physical exercise Residential history Socioeconomic status Smoking Possibility for linkage to data registries/data enrichment via data linkage   Cancer incidence Mortality register Please describe plans that are funded or most likely to be funded   not yet linked to all state cancer registries, but hope to get most soon.