| Thank you for Your Interest in our Adult and Pediatric Research
Spinal cord injury research is aimed at improving the health and wellness of individuals living with paralysis. Spinal cord injury research enables the discovery of new treatments, further development of physical therapies, and improved policies for adults and children living with paralysis. Research studies rely on volunteers with the medical conditions for which we are trying to make advances. Volunteers like you enable us to succeed and allow us to give back to our communities and gives us all hope for the future. We maintain a database of those who are interested in participating in research along with details of the condition in order to efficiently match volunteers with the research studies that need participants. Registering in the database is a two-step process that will take approximately 20 minutes. First you must create an account with your email address. You will be sent an email to confirm your address. Then you can log in to give alternate contact information and to answer the research questionnaire. Make sure that you are able to receive emails from info@victoryoverparalysis.org. If you do not receive an email within 20 minutes, check your spam folder and filters or contact your email administrator. If you answer the questions and register yourself in the database, you may be contacted to participate in any of the studies we offer. By providing us access to your contact information as well as other information such as your cause of injury and level of injury, the principal investigators can determine if you are potentially eligible for any or our current studies. However, entering yourself in the database does not guarantee enrollment into any studies and you may not be contacted. Individuals from the Kentucky Spinal Cord Injury Research Center (KSCIRC) at the University of Louisville, the Institutional Review Board (IRB), the Human Subjects Protection Program Office (HSPPO), and other regulatory agencies may inspect these records. In all other respects, however, the data will be held in confidence to the extent permitted by law. Should the data be published, your identity will not be disclosed. This study requires the use of protected health information (PHI). Examples of PHI are identifiers such as your name or birthdate together with your health information. The Health Insurance Portability and Accountability Act (HIPAA) provides federal safeguards for your PHI. In this study we will use name, date of birth, address, telephone numbers, and email addresses along with your health information relevant to this study such as your injury characteristics, personal demographics, and current medications. Your data will be kept safe by storing it on a password protected and firewalled server with access limited to those only on the research team. Additional institutions may be granted access to the database for the recruitment of potentially eligible participants for screening and enrollment at their location. Authorized personnel at outside institutions will be given credentials to login and access the database information. Each time an outside institution is added, an email will be sent to you informing you of the addition and provide a link to login to your account to opt-in or opt-out of recruitment at the newly added institution. You will also be given the option to opt-in at specific institutions during registration. Personnel from outside institutions will only be able to view your profile if you choose to opt-in. Taking part in this database is voluntary. By answering the questions below and checking that you agree to enroll, you agree to take part in our potential research volunteer database. You do not have to answer any questions that make you uncomfortable. You may choose not to take part at all. If you decide to be in this database, you may stop taking part at any time. If you decide not to be in the database or if you stop taking part at any time, you will not lose any benefits for which you qualify. If you do not agree to be a part of the database, we will not be able to contact you about research studies at KSCIRC. If you have any questions, concerns, or complaints about the database, please contact a member of the study team at 502-581-8675 (adult research participants) or 502-569-7996 (research participants under 18 years old) and they will answer your questions. If you have any questions about your rights as a research participant, you may call the Human Subjects Protection Program Office at 502-852-5188. You can discuss any questions about your rights as a research participant, in private, with a member of the Institutional Review Board (IRB). You may also call this number if you have other questions about the research, and you cannot research the study team, or want to talk to someone else. The IRB is an independent committee made up of people from the University community, staff of the institutions, as well as people from the community not connected with these institutions. The IRB has reviewed this research study. If you have any concerns or complaints about the research or research staff and you do not wish to give your name, you may call 1-877-852-1167. This is a 24-hour hotline answered by people who do not work at the University of Louisville. Thank you again for your interest. Sincerely, Susan Harkema, Ph.D. and Andrea Behrman, Ph.D. |
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