En este espacio podemos encontrar acceso a los webinars y a materiales.

Hoy, 16 de junio, se celebra el evento "Sickle Talks: Crisis vasooclusivas (CVO) en la ECF". ¡No te lo pierdas!

 

 

 

Protocolo de transición2

Ponemos a tu disposición datos presentados en el congreso de la European Hematology Association (EHA) que se celebró de forma virtual los días 9-17 de junio.

 

 

REAL-WORLD DATA FROM THE CRIZANLIZUMAB MANGED ACCESS PROGRAM: BASELINE DISEASE BURDEN AND PRIOR TREATMENTS FOR PATIENTS WITH SICKLE CELL DISEASE AND RECURRENT VASO-OCCLUSIVE CRISES

 

 

 

 

THE BURDEN OF SICKLE CELL DISEASE (scd) ON PATIENTS IN GHANA AND NIGERIA COMPARED WITH OTHER LOW-/MIDDLE-INCOME AND HIGH-INCOME COUNTRIES: RESULTS FROM THE SICKLE CELL WORLD ASSESSMENT SURVEY (SWAY)

 

 

 

 

ASSOCIATION BETWEEN HOSPITALIZED VASO-OCCLUSIVE CRISES AND MORTALITY IN SICKLE CELL DISEASE PATIENTS AGED 16 YEARS AND OLDER USING THE FRENCH NATIONAL HEALTH INSURANCE DATABASE (SNDS)

 

 

 

 

FACTORS ASSOCIATED WITH HOSPITAL ADMISSION DUE TO VASO-OCCLUSIVE CRISIS IN PATIENTS WITH SICKLE CELL DISEASE: RETROSPECTIVE ANALYSIS OF 3-YEAR OBSERVATIONAL STUDY DATA

 

 

 

A continuación, puedes ver el vídeo de Erfan Nur (Amsterdam Medical Centers, Países Bajos), donde resume los mensajes clave compartidos en la sesión Updates in Hematology del Congreso Virtual EHA 2021 por los expertos en Enfermedad de Células Falciformes (ECF). Asimismo, revisa las novedades sobre los enfoques emergentes de terapia génica para tratar la ECF.

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63ra Reunión Anual de la Sociedad Americana de Hematologia (ASH)

 

 

Durante el evento anual de ASH, en su 63ra edición del 2021 se presentaron un total de 270 comunicaciones, entre Posters y Presentaciones Orales.

El equipo de Novartis de Enfermedad de Células Falciformes ha realizado una selección de éstos orientados a ofrecer evidencia sobre manejo de las crisis vasooclusivas, daño orgánico, supervivencia, impacto de la enfermedad en la calidad de vida de los pacientes y el manejo de complicaciones asociadas en población pediátrica y adulta (en esta selección no se menciona tratamientos en desarrollo o no aprobado/financiados).

En el siguiente link, podrás acceder a todas las demás comunicaciones. Link.

 

Lista de presentaciones

 

Frequency of Vaso-Occlusive Crises Is Associated with Health-Related Quality of Life in Pediatric Patients with Sickle Cell Disease: US Cross-Sectional Surveys of Adolescents and Caregivers Campbell

#VOC #HRQL #Pediatric #US #abstrac490

 

 

 


The Increased Burden of Sickle Cell Disease in Italy: Findings from the Greatalys (Generating Real world Evidence Across ITALy In SCD) Study

Franceschi

#BurdenOfDisease #Survival #QoL #costs #hospitalization #Pedriatric #Adult #Italy #abstrac1950

 

 

 

 


Association of Hospitalization Due to Vaso-Occlusive Crisis with Subsequent Sickle Cell Disease-Related Organ Damage Hospitalization: Retrospective Analysis of 3-Year Observational Study Data

#OrganDamage #VOC #Adult #US #abstract2037

 

 

 

 


Sickle Cell Disease Mortality in Brazil: Real-World Evidence

#Mortality #RWE #VOC #adult #Brazil #abstract3025

 

 

 

 


Experiences of Sickle Cell Disease (SCD) Reported By Healthcare Professionals (HCPs) across Different Regions: International Sickle Cell World Assessment Survey (SWAY)

#SwayData #adult #pediatric #abstract3026

 

 

 

 


Association between Hospitalised Vaso-Occlusive Crises and Acute/Chronic Complications in Sickle Cell Disease Patients Aged 16 Years and Older Using the French National Health Insurance Database (SNDS)

#VOC #OrganDamage #adult #France #abstract3107

 

 

 

 


Persistence of Chronic Inflammation Despite Years of Transfusion Program in SCD Patients: Changing Red Blood Cells Is Not Sufficient to Treat Sickle Cell Disease

#Transfusion #pediatric #France #abstract764

 

 

 

 


Prevalence and Factors Associated with Echocardiographic Abnormalities in Children with Sickle Cell Disease; Results from the Displace Study

#OrganDamage #pediatric #US #abstract123

 

 

 

 


Pregnancy Outcomes in Women with Sickle Cell Disease in California: A Retrospective Cohort Study

#pregnancy #abstract489

 

 

 

 


Splenic Complications in Sickle Cell Disease: A Retrospective Cohort Review

#OrganDamage #Pediatric #US #abstract766

 

 

 

 


Limited Access to Transcranial Doppler Screening and Stroke Prevention for Children with Sickle Cell Disease in Europe: Results of a Multinational Eurobloodnet Survey

#OrganDamage #Pediatric #Europe #abstract915

 

 

 

 


The Mortality of Adult Sickle Cell Patients at a Comprehensive Sickle Cell Center

#Mortality #RWE #adult #US #abstract971

 

 

 

 


Benefits of a Disease Management Program for SCD in Germany 2011 - 2019: The Increased Use of Hydroxyurea Correlates with a Reduced Frequency of Acute Chest Syndrome

#HUGuidelines #Pediatric #Germany #abstract973

 

 

 

 


Comprehensive Assessment of Cognitive Function in Patients with Sickle Cell Disease Reveals Deficits in Memory and Processing Speed

#OrganeDamage #adult #US #abstract975

 

 

 

 


Vaso-Occlusive Events in Pediatric Sickle Cell Disease: Quantifying Social Disadvantage and Its Impact on Hospitalizations

#VOC #SocialImpact #ClinicalImpact #Pediatric #US #abstract1949

 

 

 

 


Telemedicine Has Acceptable Usability and High Satisfaction in Patients with Sickle Cell Disease

#Telemedicine #adult #US #abstract2982

 

 

 

 


Impact of Gaps in Care during Adult Care Transfer in Sickle Cell Disease

#Transition #adult #abstract2992

 

 

 

 


Severe Acute Complications of Sickle Cell Disease in Two Expert Referral Centers (UK and Italy): Natural History Studies Highlight Ongoing Unmet Need for Effective Disease Modifying or Curative Therapies

#OrganDamage #adult #UK #Italy #abstract3093

 

 

 

 


Outcomes of Patients with Sickle Cell Disease and Eskd in the Usrds Registry

#OrganDamage #Renal 3adult #US #abstract4056

 

 

 

 


ERN-EuroBloodNet European Registry of Patients Affected by Red Blood Cell Disorders and COVID-19

#Covid #adult #pediatric #EU #abstract4058

 

 

 

 

27a Reunión Anual de la Asociación Europea de Hematología (EHA)

 

 

Durante el evento anual de EHA, en su 27a edición del 2022 se presentaron un total de 80 comunicaciones, entre Posters y Presentaciones Orales. Se trata de la primera edición híbrida, con sede en Viena (Austria).

El equipo de Novartis de Enfermedad de Células Falciformes ha realizado una selección de éstos orientados a ofrecer evidencia sobre manejo de las crisis vasooclusivas (CVO), daño orgánico, supervivencia, impacto de la enfermedad en la calidad de vida de los pacientes y el manejo de complicaciones asociadas en población pediátrica y adulta (en esta selección no se menciona tratamientos en desarrollo o no aprobado/financiados).

En el siguiente link, podrás acceder a todas las demás comunicaciones. Link.

 

Lista de presentaciones

 

Consolidation of ERN-EUROBLOODNET: the European reference network on rare hematological diseases first 5 years of implementation

Abstract Number: PB2352

#innovative #sustainable #healthsystem

 

 

 

 


Healthcare professionals (HCP) opinions on treatments for sickle cell disease (SCD) and the HCP–patient relationship: results from the international sickle cell world assessment survey (SWAY)

Abstract Number: P1467

#VOC #hydroxiurea

 

 

 

 


Understanding stakeholders' knowledge on sickle cell disease and their perception on the patient journey by social media listening across Europe

Abstract number: P1484

#SCD #patientjourney #socialmedia

 

 

 

 


Natural history and rate of progression of retinopathy in patients with sickle cell disease: an 11-year retrospective follow-up analysis

Abstract number: P1470

#innovative #sustainable #healthsystem

 

 

 

 


ERN-EUROBLOODNET European registry of patients affected by red blood cell disorders and Covid-19

Abstract number: S283

#RBCD #Covid19 #riskfactors

 

 

 

 


Radiomics and artificial intelligence for identification and monitoring of silent cerebral infarcts in sickle cell disease: first analysis from the GENOMED4ALL European project

Abstract number: S265

#artificialintelligence #diagnostic #SCD

 

 

 

 


Burden of hospitalization, costs and co-morbidities in Medicaid patients with sickle cell disease (SCD): analysis of national in-patient hospital database

Abstract number: PB2335

#hospitals #admissions #SCD

 

 

 

 


Health-related quality of life over time in pediatric patients with sickle cell disease admitted for vaso-occlusive crisis

Abstract number: PB2227

#children #VOC #HRQoL #SCD

 

 

 

 


Characterizing sickle cell disease and burden of illness in the united states of America: a retrospective analysis of real-world data

Abstract number: P1477

#EMRs #dataanalytic #VOC

 

 

 

 


Patients with severe sickle cell disease on standard of care treatment are very unlikely to become VOC free for one year: a cohort study of Medicaid enrollees

Abstract number: P1482

#SCD #VOC #CTX001 #treatment

 

 

 

 


Chronic complications in the east London sickle newborn cohort study (ELSNCS)

Abstract number: P1493

#children #chronic #morbidities

 

 

 

 


A real-world experience with healthcare resource utilization patterns and related costs in patients with sickle cell disease in north Lebanon

Abstract number: PB2219

#pattern #HRU #costs #SCD

 

 

 

 


Long-term follow-up of Dutch patients with sickle cell disease diagnosed by neonatal screening – effect on the morbidity and mortality in the Netherlands

Abstract number: P1502

#neonatal #screening #SCD

 

 

 

 


Integrative diagnosis of sickle cell disease patients for personalized medicine

Abstract number: P1478

#Lorrca #parameters #hyroxiurea #SCD #genotype

 

 

 

 


Revealing the power of disease registries in real-world patient care and research – the Saudi national sickle cell disease registry success story

Abstract number: P1476

#real-world #data #registry #SCD

 

 

 

 


Creating a random forest classifier to predict HBF levels in sickle cell disease patients

Abstract number: P1473

#HbF #level #SNP #arraydata #SCD #children

 

 

 

 


New generation ektacytometry study of red blood cells rheological parameters in hemoglobinopathies

Abstract number: P1550

#Next #Generation #Ektacytometry #diagnostic

 

 

 

 


Role of red blood cell membrane-derived particles on endothelial damages during onset stage of delayed hemolytic transfusion reaction

Abstract number: S299

#DHTR #complication #RBC #SCD

 

 

 

 


A systematic literature review describing protective effects of HBF in sickle cell disease outcomes

Abstract number: PB2221

#HbF #clinical #complications #SCD

 

 

 

 


Management of sickle cell disease with hydroxyurea: a systematic review from low- and middle-income countries

Abstract number: P1489

#clinical #trials #hyroxyurea #children

 

 

 

 


Burden of sickle cell disease: results from the real-world assessment survey for sickle cell disease in Saudi (ROARS)

Abstract number: P1497

#QoL #treatments #haplotypes #variations

 

 

 

 


Projected lifetime economic burden of severe sickle cell disease in the United States

Abstract number: P1704

#lifetime #healthcare #cost #SCD

 

 

 

 


Impact of covid-19 pandemic on patients with sickle cell disease: results from the real-world assessment survey for sickle cell disease in Saudi (ROARS)

Abstract number: PB2224

#ROARS #Covid19 #impact #SCD

 

 

 

 


SCD population survey in Albania, a prospective non-interventional multi-center study evaluating disease and patients’ characteristics of sickle cell disease in Albanian SCD population

Abstract number: PB2214

#frequency #VOC #QoL #SCD #treatments

 

 

 

 


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