PD Eval and Modules
Key Information for Impact of digital resources on self-efficacy in Parkinson Disease
We are asking if you want to volunteer for a research study on the effects of digital (online) resources on improving the self-perceived ability of people with Parkinson’s Disease or their caregivers to manage their disease better.
WHAT WILL HAPPEN IF I JOIN THE STUDY?
If you join this study, your part in this research will last about 3 months. During the study, we will ask that you complete some surveys about how you perceive your ability to manage your Parkinson Disease, before, and 3 months after you get access to a set of online (digital) resources aimed at providing information and resources about Parkinson Disease.
DO I HAVE TO JOIN THIS STUDY?
No. It is okay to say no. You will not lose any services, benefits, or rights you would normally have if you decide not to join. If you decide to take part in the study, it should be because you really want to volunteer. You can decide not to participate in the study even after you have started the survey. Just tell the interviewer you’ve changed your mind and want to stop OR don’t submit the electronic survey to us.
HOW WILL MY IDENTITY AND STUDY INFORMATION BE PROTECTED?
YOUR EMAIL ADDRESS WILL BE USED TO SEND YOU AN EMAIL CONTAINING AN INTERNET HOTLINK, GIVING YOU ACCESS TO THE SURVEYS THROUGH AN INTERNET INTERFACE. UPON BEGINNING THE SURVEYS, YOU WILL BE ASSIGNED A UNIQUE STUDY NUMBER UNRELATED TO YOUR IDENTITY. YOUR EMAIL ADDRESS (THE ONLY INFORMATION IDENTIFYING YOU) WILL BE STORED SEPARATE FROM THE STUDY DATA AND DESTROYED ONCE THE STUDY IS OVER, PERMANENTLY DE-IDENTIFYING YOUR STUDY INFORMATION, WITH NO MEANS OF RECONNECTING THE INFORMATION WITH YOU.
Authorization to use and disclose of health information
We will use and disclose your health information as described in this form. We will collect the following health information about you: your responses to the study surveys, which ask about how you perceive your ability to manage your Parkinson's Disease before and after access to a set of online resources and information about your Parkinson’s disease from your medical record. We need this information to do the research. Only the study team and the people who make sure we do the research the right way, such as the UAMS Institutional Review Board and the federal Office for Human Research Protections. If we share your information with people outside of UAMS, the same rules about protecting this information may not apply. However, we think this people understand the importance of keeping information private. This authorization to use your health information expires 7 years after the study results are published. If you would like to withdraw your permission to use this information, you must send a letter with the study title from page 1 and indicate you are revoking your authorization to:
Dr. Rohit Dhall
University of Arkansas for Medical Sciences, Slot #500
4301 W. Markham St.
Little Rock, Arkansas 72205
SHOULD YOU HAVE ANY QUESTIONS AND WISH TO SPEAK WITH THE STUDY DIRECTOR, YOU MAY CALL DR. ROHIT DHALL AT (501) - 686-7236.
SHOULD YOU HAVE ANY QUESTIONS ABOUT THE STUDY AND WISH TO SPEAK WITH SOMEONE OTHER THAN STUDY PERSONNEL, YOU MAY CALL the office that supervises research (UAMS Institutional Review Board) at 501-686-5667 if I have any questions about the study or about my rights.
Please note that your completed surveys will be considered your informed consent to participate in this study.