Did you or a child have a transplant for CGD? Help the Chronic Granulomatous Disease Association of America (CGDAA) and Primary Immune Deficiency Treatment Consortium (PIDTC) learn more about post-transplant health. The survey is expected to take 10-15 minutes to complete and will help us learn how to manage post-transplant conditions and advocate for standardized medical care. Survey is open until February 14, 2024.
Participation is voluntary and information will be used to aid future families considering transplant as a treatment option as well as data to help standardize post-transplant care for CGD patients. All information is being collected for research purposes. This Survey has been approved by the University of Pittsburgh/Children’s Hospital Pittsburgh IRB. Deidentified data will be shared with the Chronic Granulomatous Disease Association of America (CGDAA) and the Primary Immune Deficiency Treatment Consortium (PIDTC). You can stop participating at any time by closing the web browser. Survey responses obtained prior to closing your web browser will be used by the investigators for the research purpose described above. If you want to withdraw your responses from the database, contact Dr. Deal at dealcl@upmc.edu with your request to withdraw. Your decision to withdraw will have no effect on your current or future relationship with the CGDAA, Primary Immune Deficiency Treatment Consortium, the University of Pittsburgh, or UPMC.
By clicking on the appropriate link below, you are agreeing to participate in this research study.
The link to take the survey is here for a parent completing for a child: https://pitt.co1.qualtrics.com/jfe/form/SV_1T90UGBlzBOxtJQ
The link to take the survey is here for someone over 18 taking it themselves: https://pitt.co1.qualtrics.com/jfe/form/SV_8i6as7686Iz8lgy
