Inventing a Disease: How Narratives Shape Rare Illness

Dear Participant:

You are being invited to participate in a research study by answering the attached survey about the role of stories and representations of rare diseases on the experiences of people who have Myositis.  There are no known risks for your participation in this research study.  The information collected may not benefit you directly; however, information learned in this study may be helpful to others. The information you provide will be part of ongoing research on the ways that rare disease is talked about by people who experience it, and may be included in presentations, publications, and future research projects.  This study is part of a larger dissertation project, which Caitlin Ray is conducting from 2018-2020. Your completed survey will be stored on the co-investigator’s flash drive, and kept in a locking file cabinet in her home. The survey will take approximately 5-10 minutes to complete.

Individuals from the Department of English, 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.

Taking part in this study is voluntary.  By completing this survey you agree to take part in this research study.  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 study you may stop taking part at any time. If you decide not to be in this study or if you stop taking part at any time, you will not lose any benefits for which you may qualify.  

If you have any questions, concerns, or complaints about the research study, please contact:  Caitlin Ray, Co-investigator at 402-707-6615 or Dr. Andrea Olinger, Primary Investigator, at 502-852-3051.

If you have any questions about your rights as a research subject, you may call the Human Subjects Protection Program Office at (502) 852-5188. You can discuss any questions about your rights as a research subject, 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 reach the research staff, 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 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 hot line answered by people who do not work at the University of Louisville.

Sincerely,

Andrea Olinger Caitlin Ray