World Sickle Cell Day June 19, 2023
Shine The Light On Sickle Cell Disease
A Time of Community Action Awareness – Education – Hope
Research Is A Stepping Stone to Developing New Medications to Treat Sickle Cell Disease &
We Have Opportunities to Participate in Clinical Trials!
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Current SCD Studies (1):
• GBT 440-041 - An Open-label, Expanded Access Protocol to provide early access to treatment with Voxelotor prior to market authorization for pediatric patients age 6 months to < 4 years with sickle cell disease who have no alternative treatment options. • GBT 131 - Phase 3, Randomized study assessing whether inclacumab infusion can prevent vaso-occlusive crisis in participants ≥ 12 years with Sickle cell disease. • GBT 132 - A Phase 3 Randomized study evaluating whether a single inclacumab infusion given just prior to, during, or around the time of discharge can reduce readmission due to VOCs in participants ≥ 12years with Sickle Cell Disease.
Current SCD Studies (2):
• GBT 133- Open-label Extension Study to Evaluate the Long-term Safety of Inclacumab IV Administered to Participants ≥ 12years with Sickle Cell Disease Who Have Participated in a Inclacumab Clinical Trial. • HIBISCUS -This study is enrolling subjects between 12 and 65 years old who have been diagnosed with SCD. The purpose of this study is to evaluate the safety and effectiveness of an oral investigational medication for sickle cell disease. • Fulcrum - Phase 1, Open-Label, study evaluating the safety and Tolerability, Pharmacokinetics and Pharmacodynamics of an oral drug in Subjects 18-65 years with Sickle Cell Disease (SCD).
Current SCD Studies (3):
• CSL889 - A 2-Part, Phase 1, Multicenter, Single-Dose, Open- Label Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of CSL889 in Adult Patients with Sickle Cell Disease. • The study includes 2 parts . • Part A : To evaluate single dose administration of CSL889 in subjects with stable SCD • Part B : To evaluate single dose administration of CSL889 in subjects with SCD in VOC.
If You Want To Participate
Contact:
Kenneth Rivlin, MD- Principal Investigator Email: Kenneth.Rivlin@nychhc.org Research Office: 718-918-6039
Work We at H+H Are Doing to Eliminate Disparities in SCD Healthcare Quality
• Improving Quality of Care • Decreasing the Stigma of SCD • ASH SCD Clinical Trials Network • HRSA Sickle cell Demonstration Project • HHS Office of Minority Health Hydroxyurea Grant • Member of National Alliance of Sickle Cell Centers
Partnering with SCD Community-Based Organizations
• Candice Sickle Cell Fund (CSCF) • Candice Young-Deler • cscfinc@gmail.com • https://www.candicessicklecellfund.org/ • Sickle Cell Thalassemia Patient Network (SCTPN) • Sarai Santiago • 347-533-8485 • https://sctpn.net/ • Westchester Sickle Cell Outreach (WSCO7)
• Toni Denicola • 914-316-9843 • www.wsco7.org
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Partnering with SCD Community-Based Organizations
• QSCAN – Queens Sickle Cell Advocacy Network • Gloria Rochester • http://newyorksicklecelladvocacynetwork.com • Sickle Cell Awareness Corporation • Merlene Sotillo & Molino Sotillo • 917-373-8434 • https://www.scafcorpint.org/ • Sickle Cell Disease Association of America (SCDAA) • 410-528-1555 • https://www.sicklecelldisease.org/
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