Sickle Cell hub

what is sickle cell?

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 infection, acute chest syndrome and stroke.

latest program

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Microcosms of Injustice Found Throughout Sickle Cell Disease

Dr. Campbell describes the inequities and injustices throughout the sickle cell community. He presents an example of a patient who almost died because she was not listened to. Physicians must listen to patients with sickle cell disease because their complaints may be a preceding symptom of severe complications.

 

Noted disparities

Renal Medullary Carcinoma is a rare, aggressive type of cancer that is not well known at this time; however, it is understood to affect young, physically active people who have sickle cell trait or disease.

 
 

Programs

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Microcosms of Injustice Found Throughout Sickle Cell Disease

Dr. Campbell describes the inequities and injustices throughout the sickle cell community. He presents an example of a patient who almost died because she was not listened to. Physicians must listen to patients with sickle cell disease because their complaints may be a preceding symptom of severe complications.

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Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma?

Dr. Pavlos Msaouel of The University of Texas MD Anderson Cancer Center discusses whether patients with sickle cell disease or who carry the sickle cell trait may be at increased risk for renal medullary carcinoma (RMC).

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Will New Sickle Cell Disease Drugs Transform Quality of Care for Patients?

Dr. Andrew Campbell of Children's National shares his excitement around the increasing treatment arsenal in sickle cell disease and how this shift might allow for more personalized approaches in care. Campbell speaks to this new era of multi-drug approaches, gene therapy, and the hope that these tools provide global options to treat sickle cell disease.

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Multinational CASiRe - Will Sickle Cell Disease Clinicians & Trials Consider Diverse Populations?

Renowned expert, Dr. Andrew Campbell, Director of the CASiRe Consortium, provides an update on an international study of nearly 900 sickle cell disease patients from Ghana, Italy, United Kingdom and United States. The first of its kind, the study led by Dr. Campbell aims to understand the different phenotypes of SCD, comparing clinical profiles of SCD patients living around the world.

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Is Sickle Cell Disease a Genetic Defense Against COVID-19?

Dr. Msaouel answers questions from the Sickle Cell community. If the disease or trait evolved as a defense against Malaria, does the reported effectiveness of anti-malaria drugs like hydroxychloroquine (Plaquenil) mean that sickle cell patients have natural resistance to the novel coronavirus, COVID-19?

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Can Patients and Providers Eliminate Health Inequities in Treating Sickle Cell Disease?

Dr. Andrew Campbell shares how communities, patients, and providers can eliminate health inequities in Sickle Cell Disease (SCD). He asserts that awareness of SCD in the general population can secure resources and funding. Dr. Campbell emphasizes we investigate why adult and pediatric patients are receiving different levels of care.

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What Is Your Sickle Cell Disease Management Plan?

Dr. Ify Osunkwo of Levine Cancer Institute/Atrium Health discusses what patients can expect related to sickle cell disease management in the near future. Dr. Osunkwo emphasizes the importance of patients being proactive with their disease management plan in order to maximize quality of life and the effects on one's mortality while living with sickle cell disease (SCD).

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What Novel Tools Are Being Used to Treat Sickle Cell Disease?

Dr. Ify Osunkwo of Levine Cancer Institute/Atrium Health discusses new therapeutic tools used to treat Sickle Cell Disease (SCD) over the last few years and how they will impact patient quality of life. Can SCD be cured early before long-term organ damage occurs? Dr. Osunkwo spotlights the need for better drug therapy, and also shares in the buzz at ASH 2019 around gene therapy options for SCD.

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How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients?

Dr. Msaouel tackles the question of how providers can combat inequities in the care of Renal Medullary Carcinoma (RMC) patients. Patients, especially young African Americans, go undiagnosed because of inadequate awareness and screening of RMC. Providers need to raise more awareness about RMC in the US and globally.

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What Can Communities Do To Eliminate Disparities in Sickle Cell Disease?

Dr. Ify Osunkwo shares how we can combat disparities in sickle cell disease. Communities need to understand that Sickle Cell Disease (SCD) is genetic. Stop shaming and blaming patients. They need support and understanding. Not just providers need education, but also school, financial, and disability systems.

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Multinational CASiRe - Will Emerging Tools Harmonize Treatment for Sickle Cell Disease Patients?

Noted pediatric hematologist, Dr. Raffaella Colombatti provides perspective on her multinational CASiRe study (Consortium for the Advancement of Sickle Cell Research) of sickle cell disease in Europe. Dr. Colombatti speaks to the need for ethnic, cultural and geographical backgrounds to be considered when administering care to SCD populations.

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Worldwide SWAY Survey: Sickle Cell Disease Deeply Impacting Patient Lives

Dr. Ify Osunkwo, Director of the Sickle Cell Disease Enterprise at Levine Cancer Institute, shares insights on an international study spanning from the United States to the Middle East. Over 2100 patients from 16 countries were surveyed, producing some insightful data. Watch Dr. Osunkwo, leader of this study speak to how this new data might help ease the daily physical and emotional struggles SCD patients face.

Clinical trials

More information coming soon.

 

NEWS

5/16/2020:

An Analysis of Racial and Ethnic Backgrounds Within the CASiRe International Cohort of Sickle Cell Disease Patients: Implications for Disease Phenotype and Clinical Research

https://link.springer.com/article/10.1007/s40615-020-00762-2

May 2020:

A study of the geographic distribution and associated risk factors of leg ulcers within an international cohort of sickle cell disease patients: the CASiRe group analysis

https://www.researchgate.net/publication/341190729_A_study_of_the_geographic_distribution_and_associated_risk_factors_of_leg_ulcers_within_an_international_cohort_of_sickle_cell_disease_patients_the_CASiRe_group_analysis

5/11/2020:

Comprehensive Molecular Characterization Identifies Distinct Genomic and Immune Hallmarks of Renal Medullary Carcinoma

https://www.cell.com/cancer-cell/fulltext/S1535-6108%2820%2930164-1

 

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