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
 
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.