Shauna Mangum, MSN, RN, CNE, PhD student at the University of New Mexico College of Nursing is conducting a study that seeks to understand the experiences of people with Gaucher disease including health-related quality of life, pain, fatigue, and treatment satisfaction. This study is being advertised in a number of Gaucher sites, so if you have already participated in this study, you do not need to take this survey again. The principal investigator (Dr. Beth Tigges, PhD, RN, PCPNP-BC) and I are both nurses and this dissertation study is part of the requirements for completing my PhD degree.
Eligible participants will be adults age 18 and over with a diagnosis of Gaucher disease type 1 and are taking any type of enzyme replacement therapy (ERT) or substrate reduction therapy (SRT). The survey has 75 questions and will take about 15 – 20 minutes to complete. The survey is anonymous and confidential.
To learn more and begin this survey, simply click on this link:
*https://redcap.link/GaucherDisease *
If you have any questions please contact Shauna Mangum at slmangum@salud.unm.edu or Dr. Beth Tigges at btigges@salud.unm.edu