Terms and Conditions
Welcome to the END ME/CFS Data Center.
The information and materials (Data) on this website are made available to persons actively employed in a research capacity, solely for research purposes. This study is a work-in-progress and includes preliminary data; we want to be OPEN and post the data as quickly as possible to encourage others to work with it and be open as well. We will continue to post results as soon as they are available. We have limited staff and will not be able to answer questions at this time but will post and expand a FAQ very shortly.
By accessing and viewing the Data, You agree to the following terms and conditions.
Use of the Data:
You may download or use the Data only for internal research purposes. You may not download or use the Data for any use not expressly authorized hereunder without prior written permission. You may not redistribute the Data or any portion thereof without prior written permission. You further agree that the Data shall not be used as the basis of a commercial product without written permission and that the Data shall not be rewritten or otherwise adapted to circumvent the need for obtaining permission for use of the Data other than as specified herein. You acknowledge that ownership of the Data will remain with the END ME/CFS Project and its contributors.
You agree to preserve, at all times, the confidentiality of Data pertaining to identifiable Data Subjects. In particular, You shall undertake not to use or attempt to use the Data to deliberately compromise or otherwise infringe the confidentiality of information on Data Subjects and their right to privacy. For purposes of this Agreement, Data Subject shall mean the person (irrespective of state of health) to whom Data refers and who has been informed of the purpose for which the Data is held and has given his/her informed consent thereto.
You agree that You shall not analyze or make any use of the Data in such a way that has the potential to: (i) lead to the identification of any Data Subject; or (ii) compromise the anonymity of any Data Subject in any way.
You agree to take all reasonable security precautions to keep the Data confidential, where such precautions are to be no less onerous than those applied in respect of your own confidential information.
You agree to notify us of any errors detected in the Data.
You agree to acknowledge in any work based in whole or part on the Data. You agree to use the acknowledgement wording provided for the relevant Data in its publication.
Acknowledgement: Data used for the analyses described in this manuscript (or publication) were contributed by Investigators of the OMF END ME/CFS Project, and are available at http://endmecfs.stanford.edu/.
Also in recognition of the effort that the Contributing Study Investigators and their institutions have made in obtaining the Data, publications and presentation using the Data must cite the primary publication(s) by the original data generator(s).
Termination of Agreement:
This Agreement will terminate immediately upon any breach by You. You accept that the changing ethical framework of human omic research may lead to: (i) alteration of the provisions of this Agreement, in which case we shall notify You in writing via electronic mail of such alterations and You may choose to accept such alterations or to terminate this Agreement; or (ii) in extreme circumstances, the withdrawal of this Agreement.
Indemnification and Disclaimer of Warranties:
You are using this Data at Your own risk, and You hereby agree to hold OMF, Stanford University, and contributing investigators harmless for any third party claims which may arise from Your download or use of the Data or any portion thereof. The Data is provided “as is”. We do not guarantee that the Data is free of errors or bugs or suitable for any particular tasks.
Any express or implied warranties, including, but not limited to, the implied warranties of merchantability, fitness for a particular purpose, noninfringement, or the absence of latent or other defects are disclaimed. In no event shall OMF, Stanford University, or the contributing researchers be liable for any direct, indirect, incidental, special, exemplary, or consequential damages however caused and on any theory of liability, whether in contract, strict liability, or tort (including negligence or otherwise) arising in any way out of the use of this data, even if advised of the possibility of such damage.
The terms and conditions herein shall be construed, governed, interpreted, and applied in accordance with the State and Federal laws and regulations of the United States. Furthermore, by accessing, downloading, or using the Database, You consent to the personal jurisdiction of, and venue in, the state and federal courts with respect to Your download or use of the Data.
(Acknowledgement: the language of this agreement is adapted from the Terms Of Access of the Cancer Cell Line Encyclopedia by the Broad Institute.)
Who is eligible to access this data?
We are making this data available to members of the global scientific research community. This includes researchers affiliated with academic institutions and persons actively employed in a research capacity.
Eligibility will be determined at the time of registration. Prospective users will be asked to submit a curriculum vitae, which our scientific team will use to determine if the user meets the definition above. We reserve the right to deny access to persons who we do not find to fulfill these criteria.
How can we use this data?
This data is made available for research purposes only. It may only be accessed by those who have registered and obtained express permission. Publications making use of this data must cite it accordingly. Please see the Terms and Conditions of data access for more details.