Have you ever wondered what it is like to participate in a sickle cell disease clinical research study? Here you will be able to watch videos of real patients with sickle cell disease discussing what is was like for them as a participant in a clinical research study.
The format of each video is similar, in that the patient is asked a set of specific questions, which they respond to in the context of their own experiences.
Click on the play button to view and please make sure your sound is turned up.
How has it been caring for a child with sickle cell disease?
How has sickle cell disease affected your life and work/school?
Describe what it is like when you have a sickle cell disease episode. What type of home remedies / techniques do you use to manage your pain?
Would you consider participating in another clinical research study in the future?
What should people do if they are considering enrolling their child in a clinical research study?
What do you think prevents other sickle cell disease sufferers from participating in sickle cell research?
What were some of your considerations when deciding to enroll your child on a clinical research study?
Did you understand that you could stop your participation in the clinical research study at any point? How did this make you feel?