Terms and Conditions
For accessing CPAD data:
Terms and Conditions
I request access to data collected by the Critical Path for Alzheimer’s Disease (CPAD) for the purpose of scientific investigation, teaching or the planning of clinical research studies and agree to the following terms and conditions:
- I will not attempt to establish the identity of, or make contact with, any of the subjects.
- I will not disclose these data beyond the use(s) specifically outlined in this application.
- I will accurately provide any information requested regarding persons who will use these data and the analyses that are planned using these data. If additional persons require access to CPAD data after initial approval of my access request, I will contact CPAD and provide the names and institutional emails for all parties.
- I will require anyone with whom I share these data to comply with the terms and conditions of this data use agreement.
- I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting and using these data.
If I publish abstracts using data from CPAD, I agree to the following:
- I will cite CPAD as the source of the data.
- Group authorship of CPAD will not be cited in the authorship line of the abstract.
If I publish manuscripts using data from CPAD, I agree to the following:
*Data used in the preparation of this article were obtained from the Critical Path for Alzheimer’s Disease database (CPAD). As such, the investigators within CPAD contributed to the design and implementation of the CPAD database and/or provided data, but did not participate in the analysis of the data or the writing of this report.
- On the author line of the manuscript, after the named authors, I will include the phrase "for the Critical Path for Alzheimer’s Disease*" with the asterisk referring to the following statement and list of names:
"Data used in the preparation of this article were obtained from the Critical Path for Alzheimer’s Disease (CPAD) database. In 2008, Critical Path Institute, in collaboration with the Engelberg Center for Health Care Reform at the Brookings Institution, formed the Critical Path for Alzheimer’s Disease (CPAD). The Coalition brings together patient groups, biopharmaceutical companies, and scientists from academia, the U.S. Food and Drug Administration (FDA), the European Medicines Agency (EMA), the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute on Aging (NIA). The Critical Path for Alzheimer’s Disease (CPAD) includes over 200 scientists from member and non-member organizations. The data available in the CPAD database has been volunteered by CPAD member companies and non-member organizations."
- I will include language similar to the following in the methods section of my manuscripts to accurately acknowledge data gathering by CPAD. 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.
- I will submit all manuscripts to CPAD prior to submitting them to a journal. This review will not be a scientific review, but is intended to ensure that the items required above are correctly implemented. CPAD will maintain confidentiality of the manuscript and will complete its review within two weeks of receipt.
- I will ensure that Investigators who utilize CPAD data use appropriate administrative, physical, and technical safeguards to prevent the use or disclosure of the data other than as provided for by this Agreement.
- I will report any use or disclosure of the data not provided for by this Agreement of which I become aware within 5 days of becoming aware of such use or disclosure.
IMPORTANT NOTE: It is the policy of the Critical Path for Alzheimer’s Disease to add additional data as it becomes available. However, data analysis is expected to take years as methods for analysis of these data evolve. Therefore, I understand that any processed data that I download might be preliminary and that results may change as new data are added.
Finally, in the event that I download data from the CPAD data base for the purposes of analysis and future publication in the form of abstracts and/or publications, I will note the date of the data I download, and I will check the data base to determine if updated data have 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 access to the CPAD database.