1. IDENTIFICATION & BASIC DESCRIPTION |
Cohort name
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Sister Study
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Country
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Please provide any other information on the cohort location/s if needed
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all states represented; includes Puerto Rico
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Name
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Dale Sandler
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Institution
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National Institute of Environmental Health Sciences
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Email
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sandler@niehs.nih.gov
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Personal website
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https://www.niehs.nih.gov/research/atniehs/labs/epi/pi/chronic/index.cfm
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Website
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- https://sisterstudy.niehs.nih.gov/
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Name of committee
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National Institute of Health
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Upload files
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Or provide website
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- https://sisterstudy.niehs.nih.gov/English/enroll-data.htm
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Contact Principal Investigator (name)
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Dale Sandler
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Data access policy (briefly describe)
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Individuals can apply to use the data via https://www.sisterstudystars.org/. We also advise talking with the Principal Investigator (Dale Sandler) before submitting.
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Is this cohort part of a consortium? (name consortium)
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Premenopausal Breast Cancer Collaborative Group, Ovarian Cancer Cohort Consortium, others
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Main aim of cohort, please briefly describe the main objectives of the cohort
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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..
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Study design (please select as many as appropriate)
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Source population (please select as many as appropriate)
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- General population: National
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Comparators (please select as many as appropriate)
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- Internal study population
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Inclusion criteria
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ages 35-74, living in the US, had a sister with breast cancer
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Exclusion criteria
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personal history of breast cancer
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Enrollment
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Completed
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Age range at entry (main cohort)
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Minimum |
Maximum |
Mean |
35 |
74 |
56 |
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Age range at entry (subcohort)
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Minimum |
Maximum |
Mean |
Please describe |
35 |
74 |
56 |
random sample has genetic, epigenetic and other data available |
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Men at enrollment
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0
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Women at enrollment
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50884
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Children (<18 years) at enrollment
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0
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Men at last follow-up
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0
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Women at last follow-up
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47000
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Children (<18 years) at last follow-up
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0
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2. OUTCOME FOLLOW-UP |
Type of data for outcome follow-up (please select as many as appropriate)
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- Active (contact with participants)
- Death certificate
- Use of registers (specify)
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Active (contact with participants) (specify)
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- annual health updates plus detailed follow-ups every 2-3 years
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Death certificate (specify)
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- National Death Index searches
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Specify: Use of registers
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- currently in pilot program to match with many state cancer registries
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First follow-up period (provide year)
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2008
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Last follow-up period (provide year)
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2021
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Number of follow-ups after baseline (provide number)
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5
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Participation at last follow-up (if known)
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90
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3. OCCUPATIONAL EXPOSURES |
Source of exposure data collected (please select as many as appropriate)
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- Questionnaire, Personal (Self-reporting or interview)
- Questionnaire, Personal (Occupational/industry modules)
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Occupational history/time frame
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Lifetime
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Occupational coding performed
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Yes
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Occupation (specify coding system used)
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- Industry and Occupation Coding for Death Certificates, effective 2003, NIOSH
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Industry (specify coding system used)
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- Industry and Occupation Coding for Death Certificates, effective 2003, NIOSH
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Types of exposure measurements
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- Biomarkers (see also section 5)
- Other (specify)
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Specify: Other
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self-report for specific exposures
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Methods for exposure assessment (please select as many as appropriate)
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- GIS (other spatial methods)
- Measurements (external sampling, biomarkers)
- Self-report
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Main categories
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- Dusts and fibres
- Solvents
- Pesticides
- Metals and metal oxides
- Other chemicals
- Biological factors
- Ergonomics, physical workload, and injury related
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Dusts and fibres | Fibres
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- Asbestos (any form of asbestos chrysotile, crocidolite, tremolite, anthophyllite, etc. or asbestos-containing material)
- Ceramic fibres
- Fibres (not specified)
- Glass wool
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Dusts and fibres | Organic dusts
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- 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)
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Solvents | Aliphatic and alicyclic hydrocarbon solvents
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- Gasoline
- Hexane
- Solvent naphtha
- Turpentine
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Solvents | Aromatic hydrocarbon solvents
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Solvents | Chlorinated hydrocarbon solvents
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- Chloroform
- Methylene chloride
- Perchloroethylene
- Trichloroethylene
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Solvents | Organic solvents, other than aliphatic, aromatic and chlorinated
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- Alcohols
- Esters
- Formaldehyde
- Glycol ethers
- Ketones
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Pesticides | Fungicides
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Pesticides | Fungicides | Specify: Other
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ask about types but not by name
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Pesticides | Herbicides
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Pesticides | Herbicides | Specify: Other
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ask about types but not by name
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Pesticides | Other
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Pesticides | Other | Specify: Other
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ask about types but not by name
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Metals and metal oxides
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- 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)
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Metals and metal oxides | Specify: Other
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antimony, arsenic
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Other chemicals | Anesthetic gases
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Other chemicals | Detergents and cleaning products
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- Cleaning products
- Detergents
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Other chemicals | Dioxins and Furans
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- Dioxins and Furans (TCDD and other polychlorinated dioxins and furans)
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Other chemicals | Engine exhaust
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- Diesel engine exhaust
- Gasoline engine exhaust
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Other chemicals | Oil mist
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- Synthetic metal processing or drilling oils or fluids
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Other chemicals | Polycyclic aromatic hydrocarbons (PAHs)
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Other chemicals | Welding fumes
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Other chemicals | Welding fumes | Specify: Other
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hobbies that involve welding
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Ergonomics, physical workload, and injury related
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- Physical work load (e.g. heavy lifting of people or objects, pushing/pulling)
- Sedentary work
- Other (specify)
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Ergonomics, physical workload, and injury related | Specify: Other
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"usual physical activity while on the job"
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4. OUTCOMES EVALUATED |
Baseline - type of outcome data collected (select more than one if applicable)
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- Biomarker (specify)
- Medical records
- Questionnaire, individual (self-recording or interview)
- Registry-based
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Registry-based
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- Cancer incidence
- Mortality register
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Follow-up - type of outcome data collected (select more than one if applicable)
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- Death certificates
- Questionnaire, individual (self-recording or interview)
- Registry-based
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Registry-based
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- Cancer incidence
- Mortality register
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Outcome type (please select as many as appropriate)
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Diagnostic groups based on ICD10
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- 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
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C + D Neoplasms
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- 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
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E Endocrinological disease
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- Thyroidea
- Parathyroidea
- Diabetes mellitus
- Other endocrinological disease
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E Malnutrition and obesity
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E Metabolism disease
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F Mental disorders
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- Dementia
- Depression
- Eating disorders
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G Disease in the nervous system
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- Parkinson's disease
- Alzheimer's disease
- Multiple sclerosis
- Sleep disorders
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H Disorders of the eye
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I Heart disease
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- Hypertensive diseases
- Acute myocardial infarction
- Chronic ischaemic heart disease
- Pulmonary embolism
- Myocarditis
- Cardiomyopathy
- Heart failure
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I Cerebrovascular diseases
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- Subarachnoid haemorrhage
- Intracerebral haemorrhage
- Cerebral infarction
- Stroke, not specified as haemorrhage or infarction
- Atherosclerosis
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J Respiratory disease
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- Chronic Bronchitis
- Emphysema
- Chronic obstructive pulmonary disease (COPD)
- Asthma
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K Diseases of oral cavity, salivary glands and jaws
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- Gingivitis and periodontal diseases
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K Hernia, colon and intestine disease
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- Crohn's disease
- Ulcerative colitis
- Diverticular disease of intestine
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K Diseases of peritoneum, liver
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M Arthritis, arthrosis, systemic connective disorders, spine disorders
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- Rheumatoid arthritis
- Systemic lupus erythematosus
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M Disorders of muscles, bones, synovialis, bursa, cartilage
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N Male and female related disorders
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- Female pelvic inflammatory disease, unspecified
- Endometriosis
- Spontaneous abortion
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Comments
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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.
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5. BIOLOGICAL SAMPLES & ANALYSIS |
Biological samples collected
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Specify: Other
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house dust from current residence
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Biological processing
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Genetic and other lab analyses
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- Adductomics
- Biomarkers (specify)
- Epigenomics
- Genomics / GWAS
- Metabolomics
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Specify: Biomarkers
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vitamin D, toenail metals
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6. Other Information |
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- Alcohol
- Anthropometry
- Demographics
- Diet
- Education
- Environmental, air pollution
- Environmental other (specify)
- Medical history
- Personality
- Physical exercise
- Residential history
- Socioeconomic status
- Smoking
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Possibility for linkage to data registries/data enrichment via data linkage
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- Cancer incidence
- Mortality register
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Please describe plans that are funded or most likely to be funded
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not yet linked to all state cancer registries, but hope to get most soon.
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