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NEST Cohort Study - Data Use Guidelines

These notes provide some guidelines on using and protecting data downloaded from this database.

  • Individual record level data (not aggregated into summary tables) should not be shared with anyone else per IRB rules. If someone else needs access they will need to submit their CITI training to the database administrator and be added to the IRB.
  • Any data you download should be stored in a secure fashion. This means it must be stored in an encrypted location and also that your computer should be encrypted. Google Drive is probably the easiest place to store it since it encrypts both at rest and in transit. You should follow computer security standards for red level data which may be found here: NCSU Endpoint Protection Standard; we typically follow the guidelines shown in table 1 on that page. Your IT group should be able to help with this if there are questions.
  • We prefer to be involved in the analyses and review potential manuscripts as they progress. As part of this process we can help answer questions about the data.
  • When submitting a manuscript for publication, all code (both used to prepare and analyze data), final data sets, and output must be shared with me. This ensures we use the same variables and cleaning steps in any future publications using the same variables.

NEST Cohort Study

Purpose of the study

The overall goals of this research study are to identify epigenetic features in the genome that affect gene regulation and that can be altered by endogenous and exogenous influences. We hypothesize that such differences in the global epigenetic profile may be due to differences in race, maternal behaviors (e.g., nutritional status, cigarette smoking, etc.) before and throughout pregnancy, or result from conception via assisted reproductive technologies. Approximately 2000 parent-child pairs remain in the study as of January 2020.

Data Collected

Univariate Glimpse | Bivariate Glimpse

We collect questionnaire data from mothers, and blood samples from mothers and infants for analyses of DNA, RNA, serum, micronutrients and proteins. Analyses will focus on comparing epigenetic differences among subjects with respect to race, in utero exposure to micronutrients and to cigarette smoking. Comparison of the maternal and infant profiles will assist in interpretation of findings regarding heritability of epigenetic changes. Data and samples collected include:

  • Maternal blood sample during pregnancy
  • Cord blood
  • Yearly height & weight
  • Medical records prenatally, from delivery, and post delivery for the child
  • Baseline surveys:
    • Socio-demographics
    • Occupational history
    • Height and weight history
    • Tobacco and alcohol use
    • Major medical conditions overall and pregnancy specific
    • Depression
    • Reproductive history including use of assisted reproductive technology
    • Diet and use of nutritional supplements
    • Medication use
    • Residential history
    • Environmental exposures including water source
    • Physical activity during pregnancy
    • Perceived stress
  • Follow-up surveys:
    • Feeding practices
    • Child development
    • Socio-demographics
    • Health
    • Medication use
    • Physical activity
    • Neighborhood characteristics
    • Parental tobacco use & and other environmental exposures
    • Sleep habits
    • Weight and height
  • Buccal Swabs used for DNA analysis in order to estimate changes in methylation fractions.
  • Diet Recalls or questionnaires for the child which use the foods, beverages, preparation methods, amounts, and recipes reported by the subject from the day prior (index day) to obtain an estimate of nutrient intake through entry into the core into the NDSR software package.
  • Accelerometer on the child to measure physical activity for three days.
  • Environmental samples such as dust, hand wipes, water, and soil.
  • Urine
  • Deciduous teeth
  • Related Databases such as education records and state led data.