Transplantation of Clustered Regularly Interspaced Short Palindromic Repeats Modified Hematopoietic Progenitor Stem Cells (CRISPR_SCD001) in Patients With Severe Sickle Cell Disease
The goal of this study, conducted by UCSF and UCLA, is to determine if a potential gene therapy, called CRISPR_SCD001, is safe for and improves the health of individuals with SCD.
12-35 years
Clinical
Yes
1/2
SCD type SS
United States of America
RISE UP: Studying whether an investigational drug can increase hemoglobin and reduce pain crises
The RISE UP Study seeks to determine whether mitapivat, an investigational oral therapy, works to improve the health of red blood cells in individuals living with SCD.
>16 years
Clinical
No
3
SCD type SS
SCD type SC
SCD type Sβ0 thalassemia
....
USA
Canada
Oman
...
Using Community Based Research Practices to Advance Anti-Racism in Sickle Cell Disease Clinical Care
This study is being conducted by Sickle Cell 101, UCSF Benioff Children's Hospitals, and BCH Diversity, Equity, Inclusion and Anti-Racism Council to address racism in SCD care.
>18 years
Survey
Yes
N/A
All types of SCD
Global & Remote
Attributional Style and Adherence to Hydroxyurea in Adults with Sickle Cell Disease (HU Adherence Study)
Investigating Hydroxyurea adherence in adult SCD patients, Clinical Psychology Ph.D. candidate Lance Archer's study seeks to improve interventions.
18 – 65 years
Survey
Yes
N/A
All types of SCD
United States and Canada
Exercise Collapse Associated with Sickle Cell Trait (ECAST)
Sickle cell trait study to determine which sickle cell trait carriers are at risk for Exercise Collapse Associated with Sickle Cell Trait (ECAST).
18 – 45 years
Other
Yes
N/A
Hb AS - sickle cell trait
US participation only
KNOWledge and Understanding of Sickle Cell Trait (KNOWUrSCT): A Global Health Disparity Research Study
This study aims to explore perceptions of sickle cell trait (SCT), SCT testing, understand related complications/experiences, and develop community-driven resources for SCT.
>18 years
Survey
Yes
N/A
Open to everyone
Global & Remote
05 Dec 2024
A recent study found that automated red blood cell exchange (aRBCX) can greatly improve the quality of life for people with sickle cell disease (SCD). The study reviewed over 20 years of data and showed that aRBCX helps reduce hospital stays, pain-related hospital visits, and procedure times, making it a promising treatment option for SCD.
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18 Oct 2024
The Gazelle™ Hb Variant Test was found to be an effective tool for accurate and affordable newborn and premarital screenings when compared with high-performance liquid chromatography (HPLC).
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07 Jul 2024
An international trial has introduced a new treatment that is as safe but more affordable for sickle cell disease as the more well-known gene therapy options.
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