With new technology becoming available, researchers are working toward generating a class of gene therapy to potentially provide life-long cures to people suffering from Sickle Cell Disease. According to the National Institute of Health, about 1 in every 365 Black or African American babies is born with Sickle Cell Disease.
To aid in this valuable research, LeukoLab is looking for people with Sickle Cell Trait to participate in a study. The study is aimed at gathering further data for researchers to support genetic therapy in people with Sickle Cell Disease.
You may have the sickle cell variant in your DNA that researchers need to test their therapies. For the entirety of the study, you may earn up to $1,810. See below for study steps.
Your first step is to complete the online form where you’ll be asked to provide a bit of contact and medical information. You'll find out right away if you meet the initial qualifications for the study. If you qualify, don't forget to self-schedule your on-site prescreening appointment!
You’ll come on-site for your prescreening appointment where we’ll take a blood panel, assess your vitals, and determine whether you meet the study criteria. You can ask any and all questions you may have on the study during this appointment.
During this on-site screening, you’ll complete a physical exam with our practitioners to ensure you are qualified for the next step and where we will draw more small whole blood samples for the researcher.
The most important step! The true goal of the study is to conduct your mobilized collection. There are many possible schedules or regimens that could take place. Your screener will help to explain the schedules and how the process works.
What is Sickle Cell Disease versus Sickle Cell Trait?
Sickle cell disease or SCD is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome, and stroke.
Sickle Cell Trait (SCT) is not a mild form of sickle cell disease. Having SCT simply means that a person carries a single gene for SCD and can pass this gene along to their children.
What is a mobilized collection and why is it needed?
Sometimes, researchers require a higher volume of cells to work with in order to conduct their studies. This is where mobilized collections come in. A mobilized collection is identical to a white blood cell collection, except the donor is injected with medications to increase the number of white blood cells we can collect. This allows for the researchers to receive a high amount of cells for the study.
I don’t have Sickle Cell Trait, but I know someone who does. How can I help?
You can help in two ways! First, share this info with anyone you know who may have Sickle Cell Trait and if they have questions about the Sickle Cell Trait study, feel free to have them email us at email@example.com. You can also call us at (510) 671-8754. Or you can just direct them to this webpage!
Second, being a carrier of the Sickle Cell Trait is a requirement for this study but you may, however, be eligible to join other research studies at LeukoLab. It’s the same process to get started. Simply, 1) Complete the online form. 2) Come on-site to get screened by our clinical staff.
How do I know if I am a carrier of Sickle Cell Trait?
Per the NIH, all states have required and provided universal newborn screening for Sickle Cell Disease since 2006, though it was done widely in many states years prior to this. This study is for those with known Sickle Cell Trait and has been told they are a carrier by a doctor or medical professional.
When will I find out which regimen I qualify for?
Your screener will let you know which regimen you qualify for at your on-site screening (Step 3).
What if I still have more questions?
You may have a lot of questions about this process and we encourage you to ask them all! If you would like to talk to someone before you sign up via our online form, please call us at (510) 671-8754 or email us at firstname.lastname@example.org.
If you’ve indicated that you have Sickle Cell Trait on our online form, you’ll also be contacted by our staff who would be happy to answer your questions.
Sickle Cell Disease affects millions of people throughout the world. In the United States, most people who have sickle cell disease are of African ancestry or identify themselves as Black. The CDC estimates:
SCD affects approximately 100,000 Americans
SCD occurs among about 1 out of every 16,300 Hispanic-American births
SCD occurs among about 1 out of every 365 Black or African-American births
About 1 in 13 Black or African-American babies is born with Sickle Cell Trait (SCT)
With your help, we can potentially eliminate sickle cell disease for future generations.