A team of rare disease patient researchers at Oregon State University that study and advocate about rare disorders, is currently conducting research studies and is seeking rare disease patients as participants for the following studies:
Adults with Rare Disorders Support Study: COVID-19 Survey
The purpose of this research study is to assess the impact of COVID-19 pandemic on people with a variety of types of rare disorders/diseases, including access to healthcare and information, and psychosocial support. The study activities include completing a survey that is adapted from established questionnaires. Your participation in this study will last about 20 minutes.
Adults with Rare Disorders Support Study: Blood Cancer Fatigue Survey
The purpose of this research study is to learn more about how people with blood cancers manage their fatigue. This study will involve a 20-30 minute survey about your blood cancer and how you manage your fatigue.
The primary investigator for both studies is Kathleen Bogart, PhD a psychology professor at Oregon State University who studies, has, and advocates about rare disorders.