“Big data” and a systems biology platform
CHILD’s wealth of longitudinal environmental, immunological, physiologic and genetic data, allows for both traditional and novel strategies of data analysis to test novel hypotheses related to DOHaD. The Study is actively participating in efforts to create standardized data definitions and transparent data dictionaries, in order to increase the utility and power of its datasets and maximize opportunities for collaboration.
ACCESSING CHILD STUDY DATA
1. Contact the NCC: If you are interested in collaborating on a project and accessing CHILD Study data, contact the Study’s National Coordinating Centre (NCC) to discuss your needs before initiating a formal request.
2. Submit a Study Proposal: To access CHILD Study data for a collaborative project, the requesting individual or group of investigators must first submit a completed Study Proposal to the CHILD Study Director at the NCC, for review by the CHILD Study Executive.
3. Submit a Data Request: If the Study Proposal is approved by the CHILD Executive, the requesting individual or group of investigators must then submit a completed Data Request to the CHILD Study Director at the NCC. The request must specify:
- The person making the request
- The date of the request
- The purpose of the request
- The data being requested, as precisely as possible; e.g., specific questions, questionnaires, objective sample data
- The population for whom data are requested; e.g., single site, all sites, Vanguard or General study
- The use that will be made of the data, including the statistical approach to analysis where appropriate
- How the data should be best formatted
- When the data are required
The request for data will be reviewed at the NCC, and a decision made in a timely manner where there are no issues regarding ownership, conflicting requests, or suggestions of ‘data-mining’ raising concern.
4. Complete a MITA: If the request is approved, before it can be fulfilled a Material and Information Transfer Agreement (MITA) must be established between McMaster University (the provider institution) and the requester’s institution, and signed by authorised representatives of both institutions as well as the CHILD Study Director and the recipient scientist.
With the MITA in place and the request approved, the Study’s Data Manager will clarify any technical uncertainties in the request and the formatting of the outputs, and will provide the data within a reasonable time frame to the requesting investigator(s).
5. Provide the resulting data set to CHILD: Data analyzed by investigators remains the property of the CHILD Study, and investigators are required to provide the NCC with documentation of derived data arising from analyses conducted using CHILD data. It is not sufficient to provide the NCC with the final publication emerging from data analyses; a full data set, including derived variables, must be provided.
6. Submit a Manuscript Proposal: If the study’s results are being considered for publication, the requesting individual or group of investigators must first submit to the NCC a Manuscript Proposal for review by the CHILD Study’s Publication Committee.
PROJECT PROPOSAL, DATA REQUEST & MANUSCRIPT PROPOSAL DOCUMENTS
These documents are offered here for planning purposes only. Do not use these documents to prepare an actual request, proposal or agreement. Staff at the CHILD Study’s National Coordinating Centre (NCC) will provide you with the appropriate documents after you discuss your needs with them.
Detailed environmental and health questionnaires have been completed by CHILD Study subjects at 11 different time points from mid-pregnancy to 5 years. No similar study has analyzed the home environment of such a large pregnancy-based cohort at the same level of detail, with “environment” interpreted broadly to include physical, chemical, viral, bacterial, nutritional and psychosocial exposures. Other data collected by questionnaires include: mode of delivery; duration and exclusivity of breastfeeding; use of daycare; exposures to medications, especially antibiotics; maternal diet during pregnancy; and infant/child diet and growth.
Clinical measures taken include general anthropometrics, allergy skin prick tests, blood pressure, waist circumference, skinfold thickness and lung function (spirometry).
The data increasingly being generated by analysis of the Study’s biological samples, including through genetic and epigenetic studies, are retained by the Study and integrated into its bioinformatics platform.
Linkage to routine health & social records
Parents have provided permission to access appropriate databases for supplemental information.
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