Privacy policy

Project NeuroFit

What happens to the information collected for this research?

Efforts will be made to limit your personal information, including research study records, to people who have a need to review this information. We cannot promise complete secrecy. Organizations that may inspect and copy your information include the IRB, the National Institute of Health, and other representatives of this organization.

We may publish the results of this research. However, we will keep your name and other identifying information confidential.

Data collected in this research might be de-identified and used for future research or distributed to another investigator for future research without your consent.

A description of this clinical trial is available on http://www.clinicaltrials.gov/, as required by U.S. Law. This website will not include information that can identify you. At most, the website will include a summary of the results. You can search this website at any time.

What is a Certificate of Confidentiality?

This research is covered by a Certificate of Confidentiality from the National Institutes of Health. A Certificate of Confidentiality helps protect your identifiable information and biological samples. The researchers with this Certificate may not disclose or use information, documents, or biospecimens that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other action, suit, or proceeding, or be used as evidence, for example, if there is a court subpoena, unless you have consented for this use. Information, documents, or biospecimens protected by this Certificate cannot be disclosed to anyone else who is not connected with the research except, if there is a federal, state, or local law that requires disclosure (such as to report child abuse or communicable diseases but not for federal, state, or local civil, criminal, administrative, legislative, or other proceedings, see below); if you have consented to the disclosure, including for your medical treatment; or if it is used for other scientific research, as allowed by federal regulations protecting research subjects.

The Certificate cannot be used to refuse a request for information from personnel of the United States federal or state government agency sponsoring the project that is needed for auditing or program evaluation by National Institutes of Health which is funding this project or for information that must be disclosed in order to meet the requirements of the federal Food and Drug Administration (FDA). You should understand that a Certificate of Confidentiality does not prevent you from voluntarily releasing information about yourself or your involvement in this research. If you want your research information released to an insurer, medical care provider, or any other person not connected with the research, you must provide consent to allow the researchers to release it.

Data Management

Contact information (names, addresses, telephone numbers, and email addresses) is necessary in order to schedule assessments and provide the intervention. Participant confidentiality will be protected by storing data in RedCAP, a secure application that has been successfully used by this team on several projects. Only authorized study personnel who have received CITI training will have access to these electronic files. Names associated with the computer data files will be used only to monitor the completion of measures and no names or identifying information will be associated with any published reports. Subject-identifiable data will be disclosed to persons or organizations not directly involved in this research only if required by law. Any data that is transmitted electronically will be de-identified, and all findings will be reported in aggregate form. All data and informed consent forms will be stored for three years following completion of the study, in accordance with Drexel policy. After this time, the data will be destroyed.