The ColoCare Study has procedures in place to share data for manuscripts, or to support research proposals. The procedures include completion of a Project Proposal Form and submission to firstname.lastname@example.org. All proposals are reviewed and approved by the ColoCare Executive Committee. We aim to ensure that the best possible research is done and to minimize overlap.
You can request existing data anytime without the involvement of ColoCare investigators. Nevertheless, we recommend that you reach out to one of the ColoCare PIs if you are thinking about developing a proposal or submit your idea to email@example.com and we assign a mentor to work with you. ColoCare is a complex study with numerous data points, and guidance is helpful. It is also a young cohort and funding for comprehensive collections has been implemented only recently. Thus, the availability of measurements can be limited for some items.
Learn more about the ColoCare Study and currently available pilot data in our Study design publication. Often this pilot data is perfectly suited for external investigators and easily made available.
The ColoCare study has established multiple working groups that allow for discussion and troubleshooting of issues in addition to promoting collaboration. Anyone is welcome to join the Scientific Working Groups.
Operational Working Groups:
- Medical Chart Abstraction Working Group
- Data Warehouse Working Group
- Pathology Working Group
Scientific Working Groups:
- Geriatric Oncology Working Group
- Diet & Nutrition Working Group
- Microbiome Working Group
- Physical Activity Working Group
- Early-onset CRC Working Group
- Body Composition Working Group
- Quality of Life Working Group
R01-based Working Groups:
- R01 Proteomics Working group
- R01 Metabolomics Working Group
- R01 Adipose Working Group
- R01 Fatigue Working Group
If you have questions, please contact the ColoCare Administrator at firstname.lastname@example.org.
Data Sharing Guidelines
Many ColoCare data and resources have been collected and developed with funds from the National Institutes of Health (NIH). These resources are made available in accordance with the NIH Sharing Policies and Related Guidance on NIH-Funded Research Resources and the NIH Genomic Data Sharing Policy. ColoCare ascribes to the FAIR principles (findability, accessibility, interoperability, and reusability) including agreement that all data should be made as widely and freely available as possible for other investigators to reproduce while safeguarding the privacy of participants and protecting confidential and proprietary data.
General Data Sharing Best Practices
- Data to be shared will be de-identified or provided in a HIPAA-defined limited dataset and comply with consent forms, IRB regulations, the Privacy Rule under HIPAA regulations, and other regulations, agreements, or stipulations that may apply.
- No protected health information except for those allowed in limited datasets, including personally identifiable information will be shared outside the study, except when needed for study purposes and only with IRB approval.
- Metadata will be made available concerning data domains that are available on a publicly accessible website or a comparable resource.
The steps from project request until publication are outlined in the schema below.
View the ColoCare Publications Policy.