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Lupus Alliance of America: Lupus Survey
Instructions
The following survey has been designed collaboratively by members of the Lupus Alliance of America and Long Island University C.W. Post Campus to be completed by persons living with Lupus and for parents to answer on behalf of their young children with Lupus. Should you decide to participate, you will be asked to take about 30 minutes to answer the following 38 questions. You will not receive any direct benefits for participating. However, the empirical knowledge gained from this study will contribute to the scientific understanding of the population of people living with Lupus and may be shared through publications and presentations. Should you feel you require support as a result of responding to the survey, a licensed social worker is available to speak with you at the following toll-free number: 1-800-850-9000.
Your participation is voluntary and you can withdraw from the study at any time without any negative consequences. Data collected will be used for research purposes only and only aggregate data will be reported in publications and presentations. Data will be kept confidential and locked in a file cabinet in the office of the principal investigators. Data will be maintained for up to 7 years. The Office of the Institutional Review Board at Long Island University/C.W. Post has approved this research study. If you have questions concerning your rights as a participant, you may also contact the Executive Secretary of the Institutional Review Board, Kathryn Rockett at 516-299-2523. If you would like a copy of the results or for more information contact:
Dr. Elissa D. Giffords
Associate Professor Social Work Department
Member, Lupus Alliance of America Board of Directors or
Dr. Orly Calderon Assistant Professor, Social Work Department
Long Island University – C.W. Post Campus
720 Northern Blvd., Brookville, NY 11548
516-299-3924
elissa.gifford@liu.edu
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