An Electronic Patient Reported Pain Assessment in Sickle Cell
What is this?
The Sickle Cell 101 research team in collaboration with study investigator have reviewed this information to ensure it is patient-friendly and accurate.
About the Study
“The Electronic Patient Reported Pain Assessment in Sickle Cell” study aims to gather insights into painful crises in people living with sickle cell disease. This study will evaluate how painful crises impact participants’ daily lives and how they currently treat these painful episodes including if they treat themselves at home or go to a doctor’s office/emergency room. The study will also evaluate the types of medications that are taken to help manage these painful episodes. Participants will be asked to complete an electronic study diary daily for six months. This study is being conducted by Sanguine Bio in partnership with Pfizer.
Sickle cell disease presents with multiple complications with one that is commonly reported being painful crises. The purpose of this study is to learn more about these painful crises in people with sickle cell disease and how they manage them. A member of the study team will conduct monthly phone calls with participants and conduct one in-person visit in the participant’s home. Participants will receive an electronic study diary from a member of the study team during this in-home visit. With this electronic study diary, participants will be asked to record how they are feeling daily in a process that takes around 5 minutes per day to complete. Participants will also be asked to provide a one-time blood sample of 8mL (about 2 teaspoons) at the beginning of the study to help researchers better understand each participant’s experiences reported.
You may be eligible to participate in this study if you:
Are 18 years of age or older
Have a confirmed diagnosis of stable sickle cell disease (HbS/S or HbS/β0 -thalassemia)
Live in the United States
You can't participate in this study if you:
Have a history of clinically significant hematological (non-SCD related), renal, endocrine, pulmonary, gastrointestinal, cardiovascular (including overt stroke but excluding silent cerebral infarct), hepatic (excluding cholelithiasis), psychiatric or neurological disease
Have a history of simple transfusion less than 4 weeks from Day 1 as assessed from medical records