Data Sharing Request
The primary goal of the Chinese Health, Aging, and Policy Program (CHAPP) is to facilitate cutting edge research on the health and aging issues pertaining to global Chinese aging population. Providing a user-friendly and accessible mechanism for data sharing is critical to achieving this goal.
As described in the National Institutes of Health (NIH) Data Sharing Policy, data sharing optimizes the use of unique data, promotes high quality and innovative collaborations across institutions, and facilitates the rapid translation of research data into publicly accessible knowledge. We believe that collaborative research effort through data sharing is critical to the success of the ongoing effort promote health and well-being among Chinese older adults.
If you are interested in using data from The PINE Study, we request that you carefully review the Data and Resource Sharing Policy (below) before submitting a Data Request.
For submitting Data Request and/or any general inquiries, please email us.
Data and Resource Sharing Policy
GENERAL POLICIES AND REQUESTS FOR DEIDENTIFIED DATA
1. Protection of Privacy
We are committed to protecting participants and subject confidentiality in compliance with all Rush University Medical Center (RUMC), HIPAA, and NIH guidelines. Shared research records are assigned random 7-digit ID numbers that are unrelated to participant identifiers. The code-breaking list is maintained only by the CHAPP researchers.
Data are shared according to the minimum necessary principle, whereby disclosures will include only those data necessary to accomplish the aims of the specific project for which data were requested.
To safeguard confidentiality, we require that non-CHAPP investigators sign and adhere to the requirements described in a formal Data Sharing Agreement. This Agreement represents a formal legal contract between CHAPP and the parent institution of the data recipient.
Recipients of PINE Study data must guarantee that they are conducting their research in accordance with the rules and regulations established by their local Institutional Review Boards (IRB). Investigators receiving PINE data may not distribute data to a third party unless approved by the CHAPP. All requests to the investigator from the third party must be directed to the CHAP in order to assure knowledge of and compliance with the rules and regulations.
Investigators agree not to use or disclose the information other than permitted by the agreement or otherwise required by law. Investigators agree to use appropriate safeguards to prevent the use or disclosure of the information and agree to report to the CHAP any uses or disclosures in violation of the agreement to which they become aware. All agents of the Investigators (including subcontractors) must be held to the same standards, restrictions, and conditions stated in the data use agreement which respect to the information. Investigators agree not to attempt to break the 7-digit ID number and identify or contact the study participants.
For PINE Survey questions, please refer to The PINE Study Codebook.
For Piety Survey questions, please refer to The Piety Study Codebook.
2. Application Process
Investigators must complete and submit a formal proposal as outlined in the Data Request Form. The investigator is required to submit a brief research proposal that includes the rationale, data requested, study design, funding, and a NIH 4-page biosketch.
3. Evaluation of the Proposal
Requests for data are reviewed by CHAPP researchers. Decisions are usually reached within two weeks of submission. Investigators will receive an electronic notification of the decision. All requests, comments, and decisions are recorded for archival purposes.
4. Data Release
Data will be directly transferred in the form of an Excel or .txt file. The CHAPP Data Management and Biostatistics team has the capability of transferring data in a wide variety of formats should the Excel spreadsheet format not be suitable for the investigator.
Investigators are responsible for ensuring that all publications using CHAPP data acknowledge the appropriate grant numbers. For example: We thank the study participants and staff of the Chinese Health, Aging, and Policy Program, Rush Institute for Healthy Aging. This work was supported by NIA grants xxxx. Grants should be acknowledged as appropriate in consultation with the CHAPP researchers.
The Data and Specimen Sharing Agreements with the National Institutes of Health require Rush Investigators to track the distribution of all data and specimens, including the recipients' grant numbers and funding.
Any publications must include PINE Study Investigators as co-authors.