Important Female X-Linked Chronic Granulomatous Disease Carrier Survey
Chronic Granulomatous Disease (CGD) is a primary immunodeficiency disease that causes the risk of severe infections and autoimmune disorders, and females can be carriers of the genetic abnormality that causes CGD.
In keeping with the mission of the CGD Association of America (CGDAA) to advance important CGD research, we hope that you will fill out this important survey about X-linked CGD carriers. The survey was designed by the Principal Investigator, Dr. Jennifer Leiding, who is a clinical immunologist at the University of South Florida (IRB#001208) in collaboration with the Primary Immune Deficiency Treatment Consortium, and the CGDAA, and will focus on female X-linked CGD carriers.
The purpose of this confidential study is to find out the symptoms and diseases that X-linked carriers experience. The results from this survey will help physicians and researchers learn more about how being an X-linked CGD carrier affects women’s lives, including diagnosis and treatment experiences, along with overall well-being and quality of life.
For many years, female X-linked CGD carriers were thought to be asymptomatic. Yet, a growing amount of research shows that they can have serious health issues relating to being an X-linked CGD carrier. This study aims to understand the medical problems carriers face and whether they have access to the appropriate health care.
Completing this online survey is an opportunity to make sure your experiences are heard and will help support our mission to raise awareness for the health problems and ailments that X-linked CGD carriers have and improve their access to the medical care and treatments they may need. The survey takes approximately 30 minutes to complete.
Please pass this on to your daughters, mothers, sisters, aunts, and grandmothers who have been diagnosed as X-linked CGD carriers. Together, we will make a difference for our women and girls!
The Female X-Linked CGD Carrier Survey will close February 28, 2021.