Questions from people with sickle cell disease and their families about research and clinical trials
Welcome back! In today’s blog, we’re going to take a sneak peek into the types of questions sickle cell disease patient advocate, Mary Brown, says are the top 10 burning questions people with sickle cell disease and their families have about research and clinical trials.
Here are some things other people with sickle cell disease and their families may be wondering about:
- What is research?
- What is clinical research?
- How does research affect the future of sickle cell disease?
- How is my safety protected if I participate in research?
- Will the study treatment work?
- Are there side effects?
- How do I know if a trial is right for me?
- Will it cost me anything?
- Can I leave the trial if I change my mind?
- Will I get to know the results when I’m done with the trial?
Scroll down to our “Say What?” section to find the answers to the first two questions!
If you want to do some extra learning, here are a few ideas:
See the research journey through the lens of someone with sickle cell disease:
Hear Dr LaShauna M. Dean, PhD debunk myths about clinical trials:
Read more about clinical trials:
Get a list of questions to ask before joining a clinical trial:
Say what? A recap of words used:
- Patient advocate: a person that supports people with a particular disease and helps guide them through the healthcare process. They can also help with communicating with healthcare providers and help with finding resources for financial, legal, and social support. They may also serve as a spokesperson for a particular disease, in order to promote awareness about it.
- Research: an investigation or study to discover new information or facts, and reach a new understanding or conclusion.
- Clinical research: a type of research in which people are studied to understand health and disease.
- Clinical trial: a type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis, or treatment of a disease.
- Study treatment:
- may not have yet been proven to be safe and/or work or
- has been proven to be safe and works for a specific disease and in a specific patient population, but not yet for other diseases and other patient populations or
- has potentially new effects that are yet to be proven.
Be sure to check back for a link to our first podcast episode with Mary Brown. She’ll answer some of these top questions that people with sickle cell disease are asking about!
Until then, don’t forget to go to the My Sickle Cell Research Xplained Facebook Group to talk to others and share your own questions about clinical research and trials.