Hydroxyurea Optimization through Precision Study (HOPS): study protocol for a randomized, multicenter trial in children with sickle cell anemia

Autor: Emily R. Meier, Susan E. Creary, Matthew M. Heeney, Min Dong, Abena O. Appiah-Kubi, Stephen C. Nelson, Omar Niss, Connie Piccone, Maa-Ohui Quarmyne, Charles T. Quinn, Kay L. Saving, John P. Scott, Ravi Talati, Teresa S. Latham, Amanda Pfeiffer, Lisa M. Shook, Alexander A. Vinks, Adam Lane, Patrick T. McGann

Publikováno v: Trials, Vol 21, Iss 1, Pp 1-14 (2020)

Abstract Background Sickle cell disease (SCD) is a severe and devastating hematological disorder that affects over 100,000 persons in the USA and millions worldwide. Hydroxyurea is the primary disease-modifying therapy for the SCD, with proven benefi

Externí odkaz: https://doaj.org/article/f4848c1e5cb84d1ca9d6331a034404f0

Optimizing Shared Decision Making about Hydroxyurea in Young Children with Sickle Cell Anemia

Autor: Aimee K. Hildenbrand, Allison A. King, Constance A Mara, Yolanda Johnson, Lisa M Shook, Catharine Whitacre, Maria T Britto, Charles T. Quinn, William Brinkman, Rogelle Hackworth, Jean L. Raphael, Venee N. Tubman, Alexis A. Thompson, Kim Smith-Whitley, Sherif M. Badawy, Susan E. Creary, Neha Bhasin, Marsha Treadwell, Steven K Reader, Angeli Rampersad, Amy Sobota, Lori E. Crosby

Publikováno v: Blood. 140:10857-10859

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::20a1638f33b175b429d35b6362279a34
https://doi.org/10.1182/blood-2022-167914

Clinical Utility of Confirmatory Genetic Testing to Differentiate Sickle Cell Trait from Sickle-β+-Thalassemia by Newborn Screening

Autor: Lisa M. Shook, Deidra Haygood, Charles T. Quinn

Publikováno v: International Journal of Neonatal Screening, Vol 6, Iss 1, p 7 (2020)

Hemoglobin separation techniques are the most commonly used laboratory methods in newborn screening and confirmatory testing programs for hemoglobinopathies. However, such protein-based testing cannot accurately detect several hemoglobinopathies in n

Externí odkaz: https://doaj.org/article/365d17dee3f948838d1d911a440a16c2

The influence of perceived racial bias and health-related stigma on quality of life among children with sickle cell disease

Autor: Anna M Hood, Lisa M Shook, Megan M. Miller, Lori E. Crosby, Zina Trost, Eva Hanson, Avi Madan-Swain, Jeffrey D. Lebensburger

Publikováno v: Ethn Health

OBJECTIVES: Individuals with sickle cell disease (SCD) experience significant health problems that may result in unpredictable pain episodes and frequent healthcare utilization. Disparities in clinical care may contribute to health-related stigma and

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ef51ed4de54dd1f05c65e4a3d98b097b
https://doi.org/10.1080/13557858.2020.1817340

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

Autor: Allison A. King, Anna M Hood, Kim Smith-Whitley, Steven K Reader, Aimee K. Hildenbrand, Connie M. Piccone, Marsha Treadwell, Francis J. Real, Charles T. Quinn, Lisa M Shook, Jean L. Raphael, Cara Nwankwo, Amy Sobota, Yolanda Johnson, Amber M Yates, Maria T. Britto, Rogelle Hackworth, Susan E Creary, William B. Brinkman, Kay L. Saving, James Peugh, Lori E. Crosby, Heather Strong, Sohail Rana, Alexis A. Thompson, Lynne Neumayr, Melissa Klein, Sherif M. Badawy, Cecelia Calhoun, Constance A. Mara, Emily Riehm Meier, Russell E. Ware

Publikováno v: JMIR Research Protocols, Vol 10, Iss 5, p e27650 (2021)
JMIR Research Protocols
Hood, A M, Strong, H, Nwankwo, C, Johnson, Y, Peugh, J, Mara, C A, Shook, L M, Brinkman, W B, Real, F J, Klein, M D, Hackworth, R, Badawy, S M, Thompson, A A, Raphael, J L, Yates, A M, Smith-Whitley, K, King, A A, Calhoun, C, Creary, S E, Piccone, C M, Hildenbrand, A K, Reader, S K, Neumayr, L, Meier, E R, Sobota, A E, Rana, S, Britto, M, Saving, K L, Treadwell, M, Quinn, C T, Ware, R E & Crosby, L E 2021, ' Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea : Protocol for a Multicenter Randomized Controlled Trial ', JMIR research protocols, vol. 10, no. 5, e27650 . https://doi.org/10.2196/27650

Background Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f8a387c60b735640f7092556fa43b1c0
https://www.researchprotocols.org/2021/5/e27650