Title of Project: Quality of Life and Patient-Reported Outcomes in Adult Patients with Primary Immunodeficiency Diseases During the COVID-19 pandemic
Principal Investigators: Dr. Thomas Michniacki and Dr. Kelly Walkovich
Immunodeficiency researchers are performing a study to learn more about the quality of life and patient-reported outcomes of adults with a primary immunodeficiency during the COVID-19 pandemic. To obtain this information, we’d like adults and/or their primary caregivers to answer a survey. We expect it to take about 30-40 minutes to complete the survey.
Adults 18+ years of age who have been diagnosed with primary immunodeficiency will be eligible to participate.
Answering this survey is voluntary. You may skip any questions that you don't feel comfortable answering but please limit the number of questions skipped as doing so will limit the scientific value of the survey. Of note, choosing not to answer our survey will not affect the medical care you receive in the future.
All information obtained from this survey will be kept confidential and your survey responses will be completely anonymous. No one, including members of our study team, will know which subjects gave which answers. The results of this study could be published in a medical article but would not include any information that would let others know who you are. Answering our survey won’t benefit you directly but we hope what we learn from our study will help improve the care given to patients with primary immunodeficiencies during the COVID-19 pandemic.
Approval for this study has been granted by the University of Michigan Medical School Institutional Review Board. Patient-reported outcome survey questions provided by © 2010-2016 PROMIS Health Organization and PROMIS Cooperative Group. Quality of life assessed via PedsQL™ - Pediatric Quality of Life Inventory™. Copyright © 1998 JW Varni, Ph.D. All rights reserved.
If you qualify for and wish to participate in our study, please complete the electronic signature process below.