Skip to content


Julie Cusack edited this page Apr 8, 2024 · 38 revisions

Questionnaire Administration

Questionnaires are administered electronically through the MyConnect PWA, which is accessible on any computer, tablet, or smartphone. Participants receive email notifications to complete the baseline modules when they join Connect and periodically for follow-up questionnaires in the subsequent years.

Baseline Questionnaire

The baseline questionnaire consists of four modules.

Module 1: Background and Overall Health (Word Doc.) (PDF)

  • Background Information (Age, Marital Status, Race/Ethnicity, 1st Language Spoken)
  • Sex & Gender (Sex Assigned at Birth, Organ Inventory, Gender Identity and Expression, Sexual Orientation)
  • Medical History (Surgeries, Non-Melanoma Skin Cancer, Diseases/Conditions)
  • Family History of Cancer (Parents, Siblings, & Children)
  • Anthropometry
  • Education & Occupation

Module 2: Medications, Reproductive Health, Exercise, and Sleep (Word Doc.) (PDF)

  • Medications (Rx & OTC)
  • Menstrual Health, Pregnancy, & Fertility History
  • Hormone Medications, Contraceptives, & Therapy
  • Physical Activity
  • Sleep
  • Shift work

Module 3: Smoking, Alcohol, and Sun Exposure (Word Doc.) (PDF)

  • Tobacco & Nicotine (Frequency & duration assessed by product type)
  • Cannabis (Frequency & duration assessed by product type)
  • Alcohol (Frequency & duration assessed by product type)
  • Sun Exposure (sun burns, sunscreen, tanning bed use)
  • Freckling
  • Natural eye, hair, & skin color

Module 4: Where you Live and Work (Word Doc.) (PDF)

  • Residential, childhood, and seasonal/vacation home history
  • Home water source and use
  • Adult tap water intake and use
  • Work commute (For job in 2019 (Pre-Pandemic) & longest-held job)
  • Student commute

Biospecimen Questionnaires

The biospecimen questionnaires are triggered following sample donation. The Blood, Urine, and Mouthwash Sample Survey (Word Doc.) (PDF) is administered when blood, urine, and mouthwash samples are collected at a research appointment. The Blood and Urine Sample Survey (Word Doc.) (PDF) is administered when blood and urine samples are collected in a clinical collection setting. The At-Home Mouthwash Sample Survey (Word Doc.) (PDF) is administered when the participant completes the mouthwash saliva sample at home.

The COVID-19 Survey (Word Doc.) (PDF) is triggered along with blood and urine sample donation, regardless of the donation setting. Prior to 7/5/2023, the COVID-19 questions were part of the Blood, Urine, and Mouthwash Sample Survey and Blood and Urine Sample Survey. The Menstrual Cycle Survey (Word Doc.) (PDF) is triggered if participants report in Blood, Urine, and Mouthwash Sample Survey or Blood and Urine Sample Survey that they menstruated in the past 60 days. The following summarizes data collected by sample donation.

Blood and Urine Data Collection

  • Behavior Before Sample Donation
  • OTC Medication Use
  • Recent Menstrual Period History
  • Pregnant & Breastfeeding Status
  • Contraceptive Use & Hormone Therapy
  • COVID-19 (Infections, Symptoms, Hospitalization, Long-term Effects, Vaccination)

Mouthwash Data Collection

  • Behavior Before Sample Donation
  • Oral Hygiene Practices & Product Use
  • Tooth Loss
  • Denture/Dental Appliance Use
  • Professional Dental Cleaning History
  • Cavities
  • Periodontal Disease
  • Antibiotics Use

Quality of Life Survey

The Quality of Life Survey is triggered 3 months post-verification. The survey consists of the PROMIS-29 Profile, and measures from the following additional domains: Satisfaction with Social Roles and Activities, Social Isolation, and Cognitive Function. The measures are in the fixed, 4-item, short-form measurement type (v2.0) and are programmed and rendered in Quest. Response values are sent through the NCI license for the PROMIS API to calculate the participant t-score. Future repeat assessments will utilize the Computer Adaptive Tests measurement type. PDFs of PROMIS measures are available on HealthMeasures.

PROMIS-29: A collection of domains assessing anxiety, depression, fatigue, pain interference, physical function, sleep disturbance, and ability to participate in social roles and activities. The 1-item Pain Intensity question is omitted from the Quality of Life Survey.

Satisfaction with Social Roles and Activities: domain assesses satisfaction with performing one’s usual social roles and activities

Social Isolation: domain assesses perceptions of being avoided, excluded, detached, disconnected from, or unknown by, others

Cognitive Function: domain assesses mental acuity, concentration, verbal and nonverbal memory, verbal fluency, and perceived changes in these cognitive functions

Call for New Concepts

The Connect Team is not currently soliciting concepts for new questionnaire topics and enhancements to existing questionnaire modules. For more information on submission requirements and future calls please visit the Call for New Concepts page.