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Public Health Genomics and Precision Health Knowledge Base (v9.0)
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Last data update: Jun 21, 2024
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Current and Future Therapeutics for Treating Patients with Sickle Cell Disease.
Mariam Barak et al. Cells 2024 13(10)
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The highest-cost Medicaid enrollees with sickle cell disease had annual health care expenditures nearing $200 000.
Junelle Speller et al. Health Aff Sch 2024 2(4) qxae029
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Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania.
Nchangwi Syntia Munung et al. Eur J Hum Genet 2024
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Two-Dimensional Ultrasound Assessment of Long-Term Intra-Abdominal Organ Changes in Children with Sickle Cell Anemia during Steady State: A Comparative Study.
C S Nwosu et al. Niger J Clin Pract 2023 26(12) 1861-1867
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Genome editing for sickle cell disease: still time to correct?
Giulia Ceglie et al. Front Pediatr 2023 111249275
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A proposed methodology of health education for inherited genetic disorders: Bag and Ball technique.
Sam Marconi David et al. Trop Doct 2023 494755231204633
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Managing Sickle Cell Disease in Patients for Whom Blood Transfusion Is Not an Option.
Bukky F Tabiti et al. Hematology/oncology and stem cell therapy 2023 16(3) 254-261
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Gene therapy in sickle cell disease: Attitudes and informational needs of patients and caregivers.
Akshay Sharma et al. Pediatric blood & cancer 2023 e30319
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Hydroxyurea for Children with Sickle Cell Disease in sub-Saharan Africa: A Summary of the Evidence, Opportunities, and Challenges.
Daniel Dexter et al. Pharmacotherapy 2023
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A Framework for a Health Economic Evaluation Model for Patients with Sickle Cell Disease to Estimate the Value of New Treatments in the United States of America.
Aaron Winn et al. PharmacoEconomics - open 2023
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Sickle cell disease among Latinx in California.
Valle Jhaqueline et al. PloS one 2022 17(10) e0276653
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Surveillance for Sickle Cell Disease - Sickle Cell Data Collection Program, Two States, 2004-2018.
Snyder Angela B et al. Morbidity and mortality weekly report. Surveillance summaries (Washington, D.C. : 2002) 2022 71(9) 1-18
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Internalizing Symptoms in Adolescents With Sickle Cell Disease.
Heitzer Andrew M et al. Journal of pediatric psychology 2022
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Sickle cell disease prevention: How prepared are the senior secondary school students in Surulere Local Government Area, Lagos, Nigeria?
Kanma-Okafor Oluchi J et al. African journal of primary health care & family medicine 2022 14(1) e1-e7
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Thalassemia screening: Low level of knowledge among unmarried youths in Kota Bharu, Kelantan, Malaysia.
Mohd Nor Muhammad Akmal et al. Malaysian family physician : the official journal of the Academy of Family Physicians of Malaysia 2022 17(1) 57-65
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Attitudes and practices of unmarried adults towards sickle cell disease: emergent factors from a cross sectional study in Nigeria's capital.
Adigwe Obi Peter et al. Hematology (Amsterdam, Netherlands) 2022 27(1) 488-493
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Process and strategies for patient engagement and outreach in the Sickle Cell Disease (SCD) community to promote clinical trial participation.
Byrnes C et al. Journal of the National Medical Association 2022
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Peripheral health workers' knowledge and experience related to sickle cell disease: an in-depth interview study in six tribal-dominated districts of India.
Babu Bontha V et al. Journal of community genetics 2022
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Treatment decision-making in sickle cell disease patients.
Booth A et al. Journal of community genetics 2021
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Toward a Conversational Agent to Support the Self-Management of Adults and Young Adults With Sickle Cell Disease: Usability and Usefulness Study.
Issom David-Zacharie et al. Frontiers in digital health 2021 3600333
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On That Edge of Fear’: One Woman’s Struggle With Sickle Cell Pain
J Eligon, NY Times, May 30, 2021
Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial.
Hood Anna M et al. JMIR research protocols 2021 10(5) e27650
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Hematopoietic stem cell transplantation for people with β-thalassaemia.
Sharma Akshay et al. The Cochrane database of systematic reviews 2021 4CD008708
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Gene therapy trials for sickle cell disease halted after two patients develop cancer
J Kaiser, Science, February 16, 2021
Erythrocyte microRNAs: a tiny magic bullet with great potential for sickle cell disease therapy.
Verma Henu Kumar et al. Annals of hematology 2021 Jan
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Insights from the Hereditary Thrombotic Thrombocytopenic Purpura Registry: Discussion of Key Findings Based on Individual Cases from Switzerland.
Kremer Hovinga Johanna A et al. Hamostaseologie 2020 Nov 40(S 01) S5-S14
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Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.
Glassberg Jeffrey A et al. Orphanet journal of rare diseases 2020 Jul 15(1) 178
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Genetic counselling in sickle cell disease: views of single young adults in Ghana.
Appiah Stella et al. Journal of community genetics 2020 Jul
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Clinical utility of combined preimplantation genetic testing methods in couples at risk of passing on beta thalassemia/hemoglobin E disease: A retrospective review from a single center.
Satirapod Chonthicha et al. PloS one 2019 14(11) e0225457
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Gene-Editing Advance Puts More Gene-Based Cures Within Reach
F Collins, NIH Director Blog, November 5, 2019
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Page last reviewed:
Feb 1, 2024
Page last updated:
Jun 21, 2024
Content source:
Public Health Genomics Branch in the Division of Blood Disorders and Public Health Genomics
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National Center on Birth Defects and Developmental Disabilities
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