St. Jude Children’s Research Hospital is one of the institutions at the forefront of sickle cell disease (SCD) research. The hospital does clinical research at their facility in Memphis, TN. Then they transfer their findings to help healthcare professionals around the world offer better care to children and more hope for adults with sickle cell. I mentioned, in my post “New State of Sickle Cell 2016 Report” that my greatest concern parenting a child living with sickle cell disorder is learning how to cope with the long-term effects that sickle cell has on the body. I am extremely concerned about how their care differs when they move from pediatric hematology, into adult care. Ideally, a patient will have the same Hematologist throughout their childhood who understands their medical needs as it relates to their personal long-term history.
Thus, the consistency of medical care throughout childhood will help physicians give better personalized care. However, when a patient grows, the disease gets worse. Unfortunately, it is at this same time patients are generally required to get a new doctor who is not as familiar with his or her unique medical situation.
Moreover, St. Jude Children’s Research Hospital is helping make a difference by following patients with sickle cell as they transition into adulthood. This type of continuity of care is unprecedented as it relates to sickle cell and can make a huge difference in a patient’s quality of life. SCCRIP is their new ground-breaking sickle cell intervention program.
SCCRIP Offers Hope For Adults with Sickle Cell
“A new study at St. Jude Children’s Research Hospital, the Sickle Cell Clinical Research and Intervention Program, helps scientists understand how sickle cell disease progresses. The study, called SCCRIP, allows participants to learn more about their health and helps researchers at St. Jude and area adult-care hospitals gain long-term insights into the disease. Children in this study will return to St. Jude for periodic checkups throughout their lives. Additionally, researchers will sequence the genes of up to 1,000 patients to understand how genetic changes affect disease severity.
What Stands Out to Me About SCCRIP
- According to the video SCCRIP is at the foundation for what is to come in sickle cell care
- SCCRIP follows patients from birth to end of life
- SCCRIP allows doctors and researchers to sequence a SCD patient’s genetic code and see how its correlates with their symptoms, which could lead to a cure and better personalized treatment
St. Jude Children’s Research Hospital. “The St. Jude Sickle Cell Clinical Research and Intervention Program.” Online Video clip. YouTube. Published on Sep 1, 2016. Retrieved September 15, 2016 from https://youtu.be/2t0eCvpN87U
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— Cleverly Changing (@Cleverlychangin) September 13, 2016
Why #30forSickleCell? Sickle Cell Awareness Month https://t.co/Krfca58SCL pic.twitter.com/1MFcKySgNQ
— Cleverly Changing (@Cleverlychangin) September 14, 2016
Reader question: What is your hope for adults with sickle cell disease?
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