I request access to data collected by the “Estudo de correlação
de ressonância magnética com variantes genéticas em octagenários
saudáveis” (OCTAGENE) for the purpose of scientific investigation or
teaching 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 OCTAGENE subjects.
2. I will not attempt to make direct contact with OCTAGENE 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 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 requests to update
this information made by the OCTAGENE study.
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 OCTAGENE, I agree to
the following:
8. I will cite OCTAGENE as the source of data and the OCTAGENE
funding sources in the abstract as space allows.
9. Acknowledgement of OCTAGENE will not be cited in the
authorship line of the abstract. If I publish manuscripts using data
from OCTAGENE, I agree to the following:
10. On the by-line of the manuscript, after the named authors, I
will include the phrase “for the OCTAGENE*” with the asterisk
referring to the following statement and list of names:
*Data used in preparation of this article were obtained from the
OCTAGENE database. As such, the investigators within the OCTAGENE
contributed to the design and implementation of OCTAGENE and/or
provided data but did not participate in analysis or writing of this
report. A complete listing of OCTAGENE investigators can be found
at:
http://apps.einstein.br/english/research/bi/edu_bi_research_groups.htm
11. I will include language similar to the following in the
methods section of my manuscripts in order to accurately acknowledge
data gathering by the OCTAGENE 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 OCTAGENE. The OCTAGENE was launched in 2010. The primary goal of
OCTAGENE has been to test whether magnetic resonance imaging (MRI),
other biological markers, and clinical and neuropsychological
assessment can be combined to measure assess the health status of
old-age individuals living in the city of São Paulo and whether
genetic variables would be associated with imaging endophenotypes.
For up-to-date information, see
https://www.einstein.br/Pesquisa/instituto-do-cerebro/Paginas/neuroimagem.aspx
12. I will acknowledge funding by the OCTAGENE 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
OCTAGENE project - OCTAGENE is funded by the Instituto Israelita de
Ensino e Pesquisa Albert Einstein and Weizmann Institute of Science,
and through generous contributions from the following: partnership:
SABE Project and Genome Project. The grantee organization is the
Brain Institute at Albert Einstein Hospital, Sao Paulo.
13. I will submit all manuscripts to the OCTAGENE Data Sharing
and Publications Committee (ODSPC) prior to submitting to a journal.
This review will not be a scientific review, but is intended to
ensure that items 7-12 above are correctly implemented. The DPC will
maintain confidentiality of the manuscript and will complete its
review within 2 weeks. The manuscripts should be sent to
edsonjr@einstein.br
14. I will ensure that Investigators who utilize OCTAGENE data
use appropriate administrative, physical and technical safeguards to
prevent use or disclosure of the data other than as provided for by
this Agreement.
15. 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.