For participants who are enrolled, detailed information about the study can be found in your Informed Consent form. Please refer to this if you have questions or contact the research team at: habri@tuprd.onmicrosoft.com or PI Dr Chen at Eunice.Chen@temple.edu.
How long will I be in this study (terms of service)?
We expect that your taking part in this research will last 12-18 months.
What happens to the information collected for this research?
Your private information will be shared with individuals and organizations (if applicable) that conduct or watch over this research, including: The research sponsor, people who work with the research sponsor, the Institutional Review Board (IRB) that reviewed this research, and Temple University. We will publish the group results of this research. You will not be able to be identified from this publication as we will keep your name and other identifying information confidential. Our publication citation will be posted on our website if this is of interest. We will share the results of the clinical, health and fitness, and cognitive tests if there are indications that further clinical assessment and possible treatment may be helpful to you. The results of these tests will only be shared with your health professionals if there is written permission by you for us to share this information with these health professionals using a Release of information to/from form. If you request, we can help find referrals for further assessment and intervention. Optional biological data – blood, saliva and fecal samples – collected in this research will be de-identified and may be used for future research. If research data are requested by outside researchers only de-identified data, which has been cleaned and analyzed, will be released by the PI. This data will be transmitted electronically using password encrypted software. Biological data will be stored in the freezer in Dr Chen’s laboratory in a locked room accessible only to the research team. These will be stored until we have grant funding that will allow for analysis of these specimens. These specimens are being collected for research purposes only. Each specimen will be stored with this data: study name, IRB protocol #, study ID, date and time of collection, type of specimen, and name of the collector.Your data is identified by an ID number and we use this on your forms and electronic data. With regards to data, we have three different databases of information, 1) a clinical data base including names, contact details and other protected health information, 2) a bridging database that links the identification number assigned to each subject and their name, 3) and a research data base that includes only identification numbers to identify subjects and the data used for analysis which includes clinical, neuropsychological, behavioral, and questionnaire data. Access to the bridging database is limited to the PI or her delegate and access to the other databases are limited to individuals who require these for their work. Data are kept in our locked laboratory and on encrypted, password-protected servers in Psychology at Temple University. Research personnel have had CITI training and are oriented and trained in our research protocols. Clinical information is not sent to other professionals except when you specifically consent to this release of information. We protect your information from disclosure to others to the extent required by law. We cannot promise complete secrecy. For instance, if you are a risk to yourself or to others, we cannot promise to keep your identity secret.