Pediatric Imaging, Neurocognition, and Genetics (PING) Study


Data Sharing and Publication Policy

Sharing PING data with the general scientific community is an objective established from the outset in the relevant NIH Request for Applications and this objective is supported by the PING Executive Committee (comprised of the 5 Co-PIs of PING) as well as representatives of the National Institute on Drug Abuse and the Eunice Kennedy Shriver National Institute of Child Health & Human Development. In preparation for this level of data sharing, each of the PING sites included wording within subject consent documents requesting permission to make PING data available in a data resource for the general scientific community.

This document outlines the policy for sharing data from the PING data resource as well as policies for publication and publication credits for those who use PING data. The intent of these policies is to facilitate the sharing of data with all interested investigators, to encourage academic productivity, and to provide a mechanism for tracking and archiving data requests, intended analyses, and publications related to and resulting from PING data.

Data Requests

The PING Data and Publications Committee (DPC) will review the applications of each investigator requesting data and make a judgment based on their affiliation with a scientific or educational institution, and on the basis of the reason for the request.

Investigators are expected to comply with all relevant rules and regulations imposed by their own institutions. This may mean that the research to be conducted with PING data must be approved or declared exempt by a committee that oversees research on human subjects, e.g. IRB or Ethics Committee. Although PING data use policies prohibit attempts to identify individuals using publicly available PING data, it is possible that some combination of the data from the PING Data Resource could be used to identify individuals.  Different committees operate under different national, state and local laws and may interpret regulations differently, so it is important for investigators to ask about this. If needed and upon request, the PING DPC will provide a certificate stating that investigators have accepted the PING Data Use Terms.

It is anticipated that most data requests will be legitimate and can be approved rapidly, and that only a few will require clarification. The DPC recommends that investigators consult their IRBs regarding policies governing IRB oversight of analysis of data from public repositories.

All sharable PING imaging and assessment data are available to individuals who register with PING and agree to the conditions in the following PING Data Use Agreement and who undergo limited screening by the DPC. These data fall under the definition of a "Limited Data Set" as defined in 45 CFR Part 164.514.

Data Request Application and Tracking

A web-based, semi-automated Data Sharing Application and Tracking system has been instituted to manage the data requests. Users will complete a web-based application form and agree to the terms of the following Data Use Agreement. When the application is received and approved by the DPC, the applicant will be given permission to access the data using the on-line interactive query interface.

Applicants will be required to provide the following information:

Applicant information will be available to other registered data users so that other data users can see what analyses are underway. This should help applicants decide whether to join in research already underway, compete with these projects or select another research topic. Applicants will receive periodic requests to update the application information. These requests will also solicit responses to the following queries about manuscripts:

Non-compliance with the required updates will jeopardize further access to PING data. The purpose of listing each proposed analysis with a lead investigator is to allow and encourage investigators considering similar projects to collaborate and to identify an individual who is taking responsibility for the use and reporting of requested data.

Publication Policy

The PING DPC will not attempt to evaluate the scientific merit of proposed analyses, nor evaluate proposed abstracts. The DPC will be charged with the administrative review of manuscripts only.

Regardless of what subset of data is used in analyses or publications, as part of the Data Use Agreement, investigators will be asked to agree to a Publication Policy as follows:

Tracking of Data Use and Publications

If PING data are used in publications, authors will be required to:

  1. Add PING group authorship as permitted by the journal in question (see Data Use Agreement)
  2. Include recommended language describing PING methods and data gathering
  3. Cite PING sponsors (see Data Use Agreement)
  4. Provide manuscript to PING DPC for review 2 weeks prior to planned submission (see Data Use Agreement)
  5. Apprise PING of acceptance or rejection
  6. Provide manuscript or abstract citation to PING upon acceptance
  7. Provide URL to published work, if possible.

Unusual Situations

It is expected that most users of PING data will follow these guidelines in good faith and that most analyses will be of reasonable quality. The DPC does not intend to review manuscripts for scientific quality, preferring to let the peer-review process sort out quality. It is recognized that PING data may even be used to support publications with conflicting results. However, we do anticipate the possibility of some unusual circumstances.

  1. Egregiously Poor Manuscripts. If a review of a proposed manuscript reveals that it is egregiously poor in terms of language, writing or sensible substance, the DPC can recommend to the authors that it not be submitted without significant revision. If the authors choose to submit the manuscript anyway, the DPC will have three options: 1) request that the group authorship credit be withheld; 2) request that the authors publish a statement to the effect that while PING data were used, the DPC did not find this manuscript of sufficient merit to warrant submission for publication, or; 3) revocation of privileges to use PING data in the future.
  2. Failure to Follow Data Use Agreement. If users inadvertently violate the Data Use Agreement, it is likely that they will self-correct as infractions are discovered. If users willfully violate the Data Use Agreement, the sole sanction available to the PING will be to revoke access to the PING data.
  3. Fraudulent Use of Data. Open access using only email registration raises the possibility that individuals could obtain access to data under false pretenses. Should the DPC discover an attempt to publish data obtained fraudulently, the data user will be sanctioned through NIH communication with them or their academic supervisors. As soon as the DPC becomes aware of any breach of the Data Use Agreement, immediate steps will be taken to cure the breach or end the violation. This may include discontinuing the user’s data access and/or reporting the violation.
  4. Journal Objections: It is possible that journal editors may object to the group authorship format with the caveat that those PING names credited have gathered data but not participated in the analysis and writing of the paper. The DPC may, on rare occasions, authorize exceptions to the authorship policy or negotiate with journal editors. However, authors are encouraged to establish that journal policies comply with PING publication policies in advance of submission..

Committee Structure and Funding

The PING DPC will be recruited by the PING Executive Committee from among PING Investigators. DPC membership will include 3 investigators and will rotate annually or as requested by members and will make recommendations to the Executive Committee regarding these and other related policies. Data and publications issues will be adjudicated by the DPC, however, if investigators disagree with the decisions of the DPC, they can appeal to the EC for final arbitration.

DATA USE AGREEMENT

I request access to sharable data collected by the Pediatric Imaging, Neurocognition and Genetics (PING) Study for the purpose of scientific investigation, scholarship, or the planning of research studies that relate to the human brain or mind, to human development, or to behavioral, psychiatric, substance use, or neurological disorders*, and I agree to the following terms:

  1. I will not attempt to establish the identity of, or attempt to contact any of the PING subjects. I agree that extracted data will not be used, either alone or in conjunction with any other information, in any effort to determine the individual identities of any of the participants from whom data were obtained or derived, or of their relatives.
  2. I will not further disclose these data beyond the uses outlined in this agreement and my data use application and understand that redistribution of data in any manner is prohibited.
  3. I will require anyone on my team who utilizes these data, or anyone with whom I share these data to comply with this data use agreement.
  4. I will accurately provide the requested information for persons who will use these data and the analyses that are planned using these data.
  5. I will respond promptly and accurately to periodic requests to update this information.
  6. I will comply with all relevant rules and regulations imposed by my institution. This may mean that I need my research to be approved or declared exempt by a committee that oversees research on human subjects, e.g. my IRB or Ethics Committee. It is possible that certain combinations of PING Data might allow identification of individuals.  Different committees operate under different national, state and local laws and may interpret regulations differently, so it is important to ask about this. If needed and upon request, the PING DPC will provide a certificate stating that you have accepted the PING Data Use Terms.

If I publish abstracts using data from PING, I agree to the following:

  1. I will cite PING as the source of data and the PING funding sources in the abstract as space allows.
  2. Group authorship of PING need not be cited in the authorship line of the abstract.
  3. I will upload abstracts onto the PING website for registered users to see either after they are accepted or after they are presented.

If I publish manuscripts using data from PING, I agree to the following:

  1. On the author line of the manuscript, after the named authors, I will include the phrase "for the Pediatric Imaging, Neurocognition and Genetics Study*" with the asterisk referring to the following statement and list of names: *Data used in preparation of this article were obtained from the Pediatric Imaging, Neurocognition and Genetics Study (PING) database (http://ping.chd.ucsd.edu). As such, the investigators within PING contributed to the design and implementation of PING and/or provided data but did not participate in analysis or writing of this report. A complete listing of PING investigators can be found at https://ping-dataportal.ucsd.edu/sharing/Authors10222012.pdf.

  2. I will include language similar to the following in the methods section of my manuscripts in order to accurately acknowledge data gathering by PING personnel. Depending upon the length and focus of the article, it may be appropriate to include more or less than the example below, however, inclusion of some variation of the language shown below is mandatory.

    Data used in the preparation of this article were obtained from the Pediatric Imaging, Neurocognition and Genetics (PING) Study database (http://ping.chd.ucsd.edu/). PING was launched in 2009 by the National Institute on Drug Abuse (NIDA) and the Eunice Kennedy Shriver National Institute Of Child Health & Human Development (NICHD) as a 2-year project of the American Recovery and Reinvestment Act. The primary goal of PING has been to create a data resource of highly standardized and carefully curated magnetic resonance imaging (MRI) data, comprehensive genotyping data, and developmental and neuropsychological assessments for a large cohort of developing children aged 3 to 20 years. The scientific aim of the project is, by openly sharing these data, to amplify the power and productivity of investigations of healthy and disordered development in children, and to increase understanding of the origins of variation in neurobehavioral phenotypes. For up-to-date information, see http://ping.chd.ucsd.edu/."

  3. I will acknowledge funding by PING in the support acknowledgement section of the manuscript using language similar to the following:

    Data collection and sharing for this project was funded by the Pediatric Imaging, Neurocognition and Genetics Study (PING) (National Institutes of Health Grant RC2DA029475). PING is funded by the National Institute on Drug Abuse and the Eunice Kennedy Shriver National Institute of Child Health & Human Development. PING data are disseminated by the PING Coordinating Center at the Center for Human Development, University of California, San Diego.

  4. I will submit all manuscripts to the PING Data and Publications Committee (DPC) prior to submitting to a journal. This review will not be a scientific review, but is intended to ensure that provisions described above are correctly implemented. The DPC will maintain confidentiality of the manuscript and will complete its review within 2 weeks.
  5. I will ensure that investigators who utilize PING data use appropriate administrative, physical and technical safeguards to prevent use or disclosure of the data other than as provided for by this Agreement.
  6. I will report any use or disclosure of the data not provided for by this Agreement of which I become aware within 15 days of becoming aware of such use or disclosure.

IMPORTANT NOTE: It is the policy of the Pediatric Imaging, Neurocognition and Genetics Study to make analyzed data available to investigators as quickly as possible. However, data analysis for this project is expected to take years as methods for analysis of these datasets evolve. Therefore, I understand that any processed data that I download might be preliminary and that results may change as new methods of analysis are implemented. I will familiarize myself with the analysis methods so that I am aware of the limitations of these data prior to using them for scientific purposes.

Finally, because "preliminary data" will be posted on the database, in the event that I download data from the PING database for the purposes of analysis and future publication in the form of abstracts and/or publications, I will note the version of the data I download, and I will check the database to determine if updated data have been provided prior to submission of any material for publication.

I understand that failure to abide by these guidelines will result in termination of my privileges to access PING data.

*If proposed research is not related to one or more of these topics you may contact PING Coordinating Center. A subset of the data is available for research falling outside of these areas.