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 or older
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 or older
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 to 65
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 to 45
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 or older
Survey
Yes
N/A
Open to everyone
Global & Remote
ASCENT1 Study
A research study investigating how well NDec works in people with sickle cell disease.
18 years or older
Clinical
Yes
2
SCD type SS
SCD type SC
SCD type Sβ0 thalassemia
....
US
Canada
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.
Learn more
19 Jun 2024
The Sickle Cell Disease Foundation (SCDF) announced a research collaboration agreement with the U.S. Food and Drug Administration’s (FDA) Center for Devices and Radiological Health (CDRH) to develop best practices for the safe and effective use of artificial intelligence (AI) and machine learning (ML) systems and digitally-derived measures that matter to patients.
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20 May 2024
Kendric Cromer, a 12-year-old boy in Washington, last week became the first person in the world with sickle cell disease to begin a commercially approved gene therapy that may cure the condition, and change his whole life.
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