POINTER Data Use Agreement
LONI | POINTER Data Use Agreement

I request access to data collected by the U.S. POINTER Neuroimaging Ancillary (POINTER Imaging) for the purpose of scientific investigation, teaching, or the planning of clinical research studies and agree to the following terms.

  1. I will receive access to de-identified data and will not attempt to establish the identity of, or attempt to contact any of the subjects of the POINTER Imaging study.
  2. I will not attempt to make direct contact with POINTER Imaging PIs or staff at sites concerning the specific results of individual subjects.
  3. I will not further disclose these data beyond the uses outlined in this agreement and the site's data use application for the parent trial, and understand that redistribution of data in any manner is prohibited.
  4. I will require anyone on my team who accesses these data, or anyone with whom I share these data, to comply with this data use agreement.
  5. I will accurately provide the requested information for persons who will access these data and the analyses that are planned using these data.
  6. I will respond promptly and accurately to annual requests to update the information provided in my data use application.
  7. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting access to POINTER data.

If I publish abstracts using data from the POINTER Imaging study, I agree to the following:

  1. I will cite POINTER Imaging study and the U.S. POINTER Study as the sources of data and acknowledge the funding sources in the abstract as space allows.

If I publish manuscripts using data from the POINTER Imaging study, I agree to the following:

  1. On the by-line of the manuscript, after the named authors, I will include the phrase “for the U.S. POINTER Neuroimaging Ancillary Study and the U.S. POINTER Study*” with the asterisk referring to the following statement:

    *Some data used in preparation of this article were obtained from the U.S. study to PrOtect brain health through lifestyle INTErvention to Reduce risk (U.S. POINTER) database.

  2. I will include language similar to the following in the methods section of my manuscripts in order to accurately acknowledge data gathering by the U.S. POINTER and POINTER Imaging 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 this language is mandatory.

    Data used in the preparation of this article were obtained from the U.S. POINTER Study database on MM/DD/YYYY. The primary goal of POINTER Imaging is to test whether biomarker outcomes (Aβ and tau, hippocampal volume, and WM hyperintensities) differ between the U.S. POINTER intervention groups (self-guided lifestyle intervention vs. a structured lifestyle intervention), and whether these are associated with changes in cognitive function measured as part of the U.S. POINTER trial.

  3. I will acknowledge funding by POINTER Imaging and the U.S. POINTER trial 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 U.S. POINTER Neuroimaging Ancillary Study (National Institutes of Health Award Number R01AG062689). The grantee organization is The Regents of the University of California, and the study is coordinated by Wake Forest University Health Sciences U.S. POINTER Coordinating Center. POINTER Imaging data are disseminated by the Laboratory of Neuro Imaging at the University of Southern California. The U.S. POINTER study is funded by the Alzheimer's Association (AA-19-611541).

The POINTER Emerging Science, Publications and Presentations Committee (ESPP) will coordinate dissemination of data from this study. The ESPP will solicit input and assistance from other investigators as appropriate and adhere to documented POINTER publication policies.

  1. I agree to submit for review and approval by the ESPP all abstracts planned for conferences and/or other public presentations. ESPP approval is required prior to data use and abstract submission.
  2. I will submit all manuscripts to the U.S. POINTER ESPP prior to submitting to a journal. This review will not be a scientific review, but is intended to ensure that items 7-11 above are correctly implemented. The U.S. POINTER ESPP will maintain confidentiality of the manuscript and will complete its review within 2 weeks.
  3. I will ensure that my collaborating investigators who access POINTER Imaging data use appropriate administrative, physical and technical safeguards to prevent use or disclosure of the data other than as provided for by this Agreement.
  4. I will report any use or disclosure of the data not provided for by this Agreement of which I become aware to the U.S. POINTER ESPP and the U.S. POINTER Neuroimaging Ancillary Study PI within 15 days of becoming aware of such use or disclosure.
  5. I understand that any processed data that I download might be preliminary and that results may change as data are edited and 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.
  6. Because “preliminary data” will be posted on the database, in the event that I download data 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 determine that I am using the most recent data that is available prior to submission of any publication.

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

I Agree
I Disagree