En este espacio podemos encontrar acceso a los webinars y a materiales.
El 16 de junio se celebró el evento "Sickle Talks: Crisis vasooclusivas (CVO) en la ECF". A continuación, puedes consultar la agenda:
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.
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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
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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) |
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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)
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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.
ES2201277057
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 |
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The Increased Burden of Sickle Cell Disease in Italy: Findings from the Greatalys (Generating Real world Evidence Across ITALy In SCD) StudyFranceschi #BurdenOfDisease #Survival #QoL #costs #hospitalization #Pedriatric #Adult #Italy #abstrac1950 |
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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 |
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Sickle Cell Disease Mortality in Brazil: Real-World Evidence#Mortality #RWE #VOC #adult #Brazil #abstract3025 |
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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 |
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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 |
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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 |
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Prevalence and Factors Associated with Echocardiographic Abnormalities in Children with Sickle Cell Disease; Results from the Displace Study#OrganDamage #pediatric #US #abstract123 |
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Pregnancy Outcomes in Women with Sickle Cell Disease in California: A Retrospective Cohort Study#pregnancy #abstract489 |
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Splenic Complications in Sickle Cell Disease: A Retrospective Cohort Review#OrganDamage #Pediatric #US #abstract766 |
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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 |
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The Mortality of Adult Sickle Cell Patients at a Comprehensive Sickle Cell Center#Mortality #RWE #adult #US #abstract971 |
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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 |
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Comprehensive Assessment of Cognitive Function in Patients with Sickle Cell Disease Reveals Deficits in Memory and Processing Speed#OrganeDamage #adult #US #abstract975 |
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Vaso-Occlusive Events in Pediatric Sickle Cell Disease: Quantifying Social Disadvantage and Its Impact on Hospitalizations#VOC #SocialImpact #ClinicalImpact #Pediatric #US #abstract1949 |
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Telemedicine Has Acceptable Usability and High Satisfaction in Patients with Sickle Cell Disease#Telemedicine #adult #US #abstract2982 |
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Impact of Gaps in Care during Adult Care Transfer in Sickle Cell Disease#Transition #adult #abstract2992 |
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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 |
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Outcomes of Patients with Sickle Cell Disease and Eskd in the Usrds Registry#OrganDamage #Renal 3adult #US #abstract4056 |
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ERN-EuroBloodNet European Registry of Patients Affected by Red Blood Cell Disorders and COVID-19#Covid #adult #pediatric #EU #abstract4058 |
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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 implementationAbstract Number: PB2352 #innovative #sustainable #healthsystem |
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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 |
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Understanding stakeholders' knowledge on sickle cell disease and their perception on the patient journey by social media listening across EuropeAbstract number: P1484 #SCD #patientjourney #socialmedia |
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Natural history and rate of progression of retinopathy in patients with sickle cell disease: an 11-year retrospective follow-up analysisAbstract number: P1470 #innovative #sustainable #healthsystem |
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ERN-EUROBLOODNET European registry of patients affected by red blood cell disorders and Covid-19Abstract number: S283 #RBCD #Covid19 #riskfactors |
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Radiomics and artificial intelligence for identification and monitoring of silent cerebral infarcts in sickle cell disease: first analysis from the GENOMED4ALL European projectAbstract number: S265 #artificialintelligence #diagnostic #SCD |
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Burden of hospitalization, costs and co-morbidities in Medicaid patients with sickle cell disease (SCD): analysis of national in-patient hospital databaseAbstract number: PB2335 #hospitals #admissions #SCD |
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Health-related quality of life over time in pediatric patients with sickle cell disease admitted for vaso-occlusive crisisAbstract number: PB2227 #children #VOC #HRQoL #SCD |
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Characterizing sickle cell disease and burden of illness in the united states of America: a retrospective analysis of real-world dataAbstract number: P1477 #EMRs #dataanalytic #VOC |
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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 enrolleesAbstract number: P1482 #SCD #VOC #CTX001 #treatment |
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Chronic complications in the east London sickle newborn cohort study (ELSNCS)Abstract number: P1493 #children #chronic #morbidities |
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A real-world experience with healthcare resource utilization patterns and related costs in patients with sickle cell disease in north LebanonAbstract number: PB2219 #pattern #HRU #costs #SCD |
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Long-term follow-up of Dutch patients with sickle cell disease diagnosed by neonatal screening – effect on the morbidity and mortality in the NetherlandsAbstract number: P1502 #neonatal #screening #SCD |
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Integrative diagnosis of sickle cell disease patients for personalized medicineAbstract number: P1478 #Lorrca #parameters #hyroxiurea #SCD #genotype |
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Revealing the power of disease registries in real-world patient care and research – the Saudi national sickle cell disease registry success storyAbstract number: P1476 #real-world #data #registry #SCD |
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Creating a random forest classifier to predict HBF levels in sickle cell disease patientsAbstract number: P1473 #HbF #level #SNP #arraydata #SCD #children |
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New generation ektacytometry study of red blood cells rheological parameters in hemoglobinopathiesAbstract number: P1550 #Next #Generation #Ektacytometry #diagnostic |
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Role of red blood cell membrane-derived particles on endothelial damages during onset stage of delayed hemolytic transfusion reactionAbstract number: S299 #DHTR #complication #RBC #SCD |
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A systematic literature review describing protective effects of HBF in sickle cell disease outcomesAbstract number: PB2221 #HbF #clinical #complications #SCD |
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Management of sickle cell disease with hydroxyurea: a systematic review from low- and middle-income countriesAbstract number: P1489 #clinical #trials #hyroxyurea #children |
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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 |
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Projected lifetime economic burden of severe sickle cell disease in the United StatesAbstract number: P1704 #lifetime #healthcare #cost #SCD |
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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 |
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SCD population survey in Albania, a prospective non-interventional multi-center study evaluating disease and patients’ characteristics of sickle cell disease in Albanian SCD populationAbstract number: PB2214 #frequency #VOC #QoL #SCD #treatments |
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