I request access to data housed at the BioSpecimen Exchange for Neurological Disorders (BioSEND) for the purpose of scientific investigation, teaching, or the planning of clinical research studies and agree to the following terms:
Section I: Access, Use, and Safeguards
A. I will receive de-identified data and will not attempt to establish the identity of, or attempt to contact any of, the subjects with data in BioSEND.
B. I will not attempt to identify any specific study sites, unless BioSEND has approved such identification as part of my project's protocol.
C. I understand that distributing these data to a third party is prohibited, and therefore I will not distribute these data beyond the uses outlined in this agreement. A third party is defined as anyone who is not a collaborator or co-author on the analyses defined in my proposal.
D. I will require anyone on my team who uses the data, or anyone with whom I share these data, to comply with this Data Agreement.
E. I will accurately provide the requested information about persons who will use the data and analyses that are planned using these data.
F. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting and using these data.
G. I understand that any data I download may change as new quality assurance measures are implemented and data records are updated.
H. I will ensure that Investigators who utilize data obtained from BioSEND use appropriate administrative, physical, and technical safeguards to prevent use or disclosure of the data other than as provided for by this Agreement.
I. 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.
J. I understand that any Data delivered pursuant to this Agreement is provided “AS IS.” PROVIDER MAKES NO REPRESENTATIONS AND EXTENDS NO WARRANTIES OF ANY KIND, EITHER EXPRESSED OR IMPLIED. THERE ARE NO EXPRESSOR IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE, OR THAT THE USE OF THE DATA WILL NOT INFRINGE ANY PATENT, COPYRIGHT, TRADEMARK, OR OTHER PROPRIETARY RIGHTS. Notwithstanding, Provider, to the best of its knowledge and belief, has the right and authority to provide the Data to Recipient.
Except to the extent prohibited by law, the Recipient assumes all liability for damages which may arise from its use, storage, disclosure, or disposal of the Data. The Provider will not be liable to the Recipient for any loss, claim, or demand made by the Recipient, or made against the Recipient by any other party, due to or arising from the use of the Data by the Recipient, except to the extent permitted by law when caused by the gross negligence or willful misconduct of the Provider. No indemnification for any loss, claim, damage, or liability is intended or provided by either party under this Agreement.
Section II: Data Analysis
A. I will respond promptly and accurately to BioSEND’s requests for updates on the status of my analyses.
B. I will review the data documentation provided by BioSEND and consult with BioSEND research coordinators in order to ensure the accurate use and description of study data in my analysis and any ensuing presentations or publications, as well as to ensure the understanding of subtle data complexities.
C. If more than 1 year passes before publication, I will download an updated dataset to ensure the most accurate and up to date data is used.
Section III: Publication
A. I will include the BioSEND acknowledgement for all samples and data obtained:
Samples and data from the BioSpecimen Exchange for Neurological Disorders (BioSEND), which receives government support under a cooperative agreement grant (U24NS095871) awarded by the National Institute of Neurological Disorders and Stroke (NINDS), were used in this study. We thank contributors who collected samples used in this study, as well as patients and their families, whose help and participation made this work possible.
B. I will acknowledge the work by each specific study that went into accumulating the data and samples and its funding source(s), and will include language in the manuscripts associated with the correct collection as requested by BioSEND. Every study has specific acknowledgement language. Please contact email@example.com to obtain standard language. As new catalogs are added, additional language will continue to be listed.
2CARE: The 2CARE study supported the collection of samples used in this study through National Institute of Neurological Disorders and Stroke (NINDS) grants NS052619 and NS052592. We thank contributors who collected samples used in this study, as well as patients and their families, whose help and participation made this work possible. The 2CARE collection is currently housed at the NINDS BioSEND repository at Indiana University under grant U24NS095871.
CRC-SCA: Data and biospecimens used in this study were collected via The National Ataxia Foundation funded CRC-SCA consortium web site. We kindly acknowledge the patients involved in this consortium for their generous contributions to this work.
FTLD: These samples were collected, in part, via the Early Symptoms of FTLD Study (R01 NS076837).
PREDICT-HD/PREVENT-HD: Samples used in this study were in part collected via the PREDICT-HD study (U01 NS082089). All manuscripts submitted, in addition to the appropriate authors, will acknowledge the Predict HD study investigators followed by an asterisk. The asterisk will point to a printed and/or, in a case of an electronic publication, web site (if allowed by the journal) listing the names of Predict HD study investigators.
READISCA: The READISCA study supported the collection of samples used in this study through National Institute of Neurological Disorders and Stroke (NINDS) grants NS104326. We thank contributors who collected samples used in this study, as well as patients and their families, whose help and participation made this work possible. The READISCA collection is currently housed at the NINDS BioSEND repository at Indiana University under grant U24NS095871.
LETBI: National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) (1RF1NS115268-01), Clinical & Biological Signatures of post-traumatic neurodegeneration: Toward in-vivo diagnosis of the Late Effects of TBI (LETBI).
C. I will notify BIOSEND if my manuscript is accepted for publication and/or presentation.
D. I will ensure the proper submission of all published work to PubMed Central (PMC) in order to comply with the NIH Public Access Policy.
I understand that failure to abide by these guidelines will result in termination of my privileges to access BioSEND data.
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