LONI | ABCDS Data Use Agreement

ABCDS Data Use Agreement

Appendix 2. ABC-DS Data Use Agreement
 
I have read the ABC-DS Policies for Publications document located at https://www.nia.nih.gov/research/abc-ds#data.
 
I request access to data collected by the ABC-DS study for the purpose of scientific investigation, teaching or the planning of clinical research studies. Upon review and approval of access to data and/or biospecimen, I acknowledge 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 ABC-DS participants.
  2. I will not attempt to make direct contact with ABC-DS investigators or staff at sites concerning the specific results of individual participants.
  3. 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.
  4. 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.
  5. I will accurately provide the requested information for persons who will use these data and the analyses that are planned using these data.
  6. I will respond promptly and accurately to annual requests to update this information.
  7. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting these data.
If I publish abstracts using data from the ABC-DS study, I agree to the following:
  1. I will cite ABC-DS as the source of data and the ABC-DS funding sources (including grant numbers) in the abstract as space allows.
  2. Acknowledgement of ABC-DS will not be cited in the authorship line of the abstract.
If I publish manuscripts using data from the ABC-DS 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 Alzheimer's Biomarker Consortium on Down Syndrome study*" with the asterisk referring to the following statement and list of names:

    *Data used in preparation of this article were obtained from the Neurodegeneration in Aging Down syndrome (NiAD) database (niad.loni.usc.edu) and Alzheimer's Disease in Down Syndrome (ADDS) database. As such, the investigators within the ABC-DS study contributed to the design and implementation of ABC-DS and/or provided data but did not participate in analysis or writing of this report. A complete listing of ABC-DS investigators can be found at: https://www.nia.nih.gov/research/abc-ds#data.

  1. I will include language similar to the following in the methods section of my manuscripts in order to accurately acknowledge data gathering by the ABC-DS 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.

    The preparation of this manuscript was made possible from data obtained by the Alzheimer's Biomarkers Consortium –Down Syndrome (ABC-DS), a longitudinal study of Alzheimer Disease biomarkers in adults with Down syndrome supported by grants from the National Institute on Aging (NIA) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The primary goal of ABC-DS is to understand the factors that moderate the relationship between Aβ, neurodegeneration and dementia in DS and biomarkers for those factors that could be critically important in the design of effective therapeutic trials for AD, not only in DS, but in the general population as well.

    The Principal Investigators of the ABC-DS study are Benjamin Handen, PhD and William Klunk, MD, PhD, (University of Pittsburgh), Bradley Christian, PhD (University of Wisconsin-Madison), Nicole Schupf, PhD, Dr PH (Columbia University), and Ira Lott, MD and Wayne Silverman, PhD (UC Irvine). The ABC-DS study is a collaboration of field sites at Pittsburgh, Madison, Phoenix (Banner Alzheimer's Institute; Marwan Sabbagh, MD), the University of Cambridge (Shahid Zaman, MD), Washington University (Beau Ances, MD, PhD and John Constantino, MD), Columbia University, Harvard University (Florence Lai, MD and H Diana Rosas, MD) and UC Irvine. ABC-DS was established to collect longitudinal clinical, neuroimaging, genetic and biofluid markers in approximately 400 participants with DS who were primarily non-demented.

  1. I will acknowledge the ABC-DS study in the support acknowledgement section of the manuscript using language similar to the following:

    "Data collection and sharing for this project was supported by The Alzheimer's Disease Biomarker Consortium on Down Syndrome (ABC-DS) funded by the National Institute on Aging (NIA) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (UO1 AG051406 and UO1 AG051412). The authors thank the adults with Down syndrome volunteering as participates in this study for their invaluable contributions to this work, along with their service providers and families. Finally, the authors thank the staff contributing their many hours of support to this work, including (with names of specific individuals provided, as determined by the lead author(s)."

  1. I will submit all manuscripts to the ABC-DS Steering Committee prior to submitting to a journal. This review will not be a scientific review, but is intended to ensure that sections 7-12 above are correctly implemented. The ABC-DS Steering Committee will maintain confidentiality of the manuscript and will complete its review within 2 weeks.
  2. I will ensure that Investigators who utilize ABC-DS data use appropriate administrative, physical and technical safeguards to prevent use or disclosure of the data other than as provided for by this Agreement.
  3. 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 ABC-DS 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 ABC-DS databases 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 databases to determine if updated data has 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 data from the ABC-DS study.
I Agree
I Disagree