CureSCi Metadata Catalog-Making sickle cell studies findable. by Huaqin Pan, Cataia Ives, Meisha Mandal, Ying Qin, Tabitha Hendershot, Jen Popovic, Donald Brambilla, Jeran Stratford, Marsha Treadwell, Xin Wu, Barbara Kroner

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Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations by Nchangwi Syntia Munung, Nchangwi Syntia Munung, Victoria Nembaware, Victoria Nembaware, Jantina de Vries, Daima Bukini, Furahini Tluway, Marsha Treadwell, Marsha Treadwell, Raphael Zozimus Sangeda, Raphael Zozimus Sangeda, Gaston Mazandu, Gaston Mazandu, Mario Jonas, Mario Jonas, Vivian Paintsil, Obiageli E. Nnodu, Emmanuel Balandya, Julie Makani, Ambroise Wonkam, Ambroise Wonkam

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Assent, parental consent and reconsent for health research in Africa: thematic analysis of national guidelines and lessons from the SickleInAfrica registry by Nchangwi Syntia Munung, Victoria Nembaware, Lawrence Osei-Tutu, Marsha Treadwell, Okocha Emmanuel Chide, Daima Bukini, Hilda Tutuba, SickleInAfrica ELSI WG, Ambroise Wonkam

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Tracking Telehealth Needs for Individuals With Sickle Cell Disease Through the COVID‐19 Pandemic: A Cross‐Sectional Survey Study by Marsha Treadwell, Lisa Du, Yemi Lawrence, Maxine Gaspar, Kathryn Hassell, Sanjay Shah, Moses Akpan, Nicole Crook, Marcia Taylor, Srila Gopal, For the Pacific Sickle Cell Regional Collaborative

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Perspectives of individuals with sickle cell disease on barriers to care. by Shannon Phillips, Yumei Chen, Rita Masese, Laurence Noisette, Kasey Jordan, Sara Jacobs, Lewis L Hsu, Cathy L Melvin, Marsha Treadwell, Nirmish Shah, Paula Tanabe, Julie Kanter

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Perspectives of individuals with sickle cell disease on barriers to care by Shannon Phillips, Yumei Chen, Rita Masese, Laurence Noisette, Kasey Jordan, Sara Jacobs, Lewis L. Hsu, Cathy L. Melvin, Marsha Treadwell, Nirmish Shah, Paula Tanabe, Julie Kanter

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The effect of an adapted digital mental health intervention for sickle cell disease on engagement: a pilot randomized controlled trial by Emily V. Nardo, Ektha Parchuri, Julia A. O’Brien, Lori Crosby, Jerlym Porter, Tonya Palermo, Cara Nikolajski, Marsha Treadwell, Cheryl A. Hillery, Eva Szigethy, Charles R. Jonassaint

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Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers i... by Robert Gibson, Jane S Hankins, Matthew P Smeltzer, Kristen E Howell, Marsha Treadwell, Liliana Preiss, Allison A King, Jeffrey A Glassberg, Paula Tanabe, Sherif M Badawy, Lisa DiMartino, Julie Kanter, Lisa M Klesges

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What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease. by Andrea E Lamont, Lewis L Hsu, Sara Jacobs, Robert Gibson, Marsha Treadwell, Yumei Chen, Richard Lottenberg, Kathleen Axelrod, Taniya Varughese, Cathy Melvin, Sharon Smith, Ifeanyi Beverly Chukwudozie, Julie Kanter, Sickle Cell Disease Implementation Consortium

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Burden of Aging: Health Outcomes Among Adolescents and Young Adults With Sickle Cell Disease by Kristen E. Howell, Norma Pugh, Jennifer Longoria, Nirmish Shah, Abdullah Kutlar, Victor R. Gordeuk, Allison A. King, Jeffrey Glassberg, Mariam Kayle, Cathy Melvin, Marsha Treadwell, Jane S. Hankins, Jerlym S. Porter, on behalf of the Sickle Cell Disease Implementation Consortium*

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Impact of Elosulfase Alfa on Pain in Patients with Morquio A Syndrome over 52 Weeks by Marsha Treadwell, Paul R. Harmatz, Barbara K. Burton, John J. Mitchell, Nicole Muschol, Simon A. Jones, Gregory M. Pastores, Heather A. Lau, Rebecca Sparkes, V. Reid Sutton, Bianca Meesen, Christine A. Haller, Adam J. Shaywitz, Jeffrey I. Gold

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Challenges of Engaging Primary Care Providers in Specialized Telementoring Education About Sickle Cell Disease for Sickle Cell Specialists: Results from the Sickle Cell Disease Tra... by Lisa M. Shook, DHPE, MA, MCHES, Bailey House, MPH, Christina Bennett Farrell, MPH, Rosalyn Stewart, MD, Sophie Lanzkron, MD, MHS, Allison A. King, MD, MPH, PhD, Taniya Varughese, MSOT, J.J. Strouse, MD, PhD, Marsha Treadwell, PhD, Julie Kanter, MD

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Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry by Gustavo G. Mendez, Judith M. Nocek, Donald J. Brambilla, Sara Jacobs, Oladipo Cole, Julie Kanter, Jeffrey Glassberg, Kay L. Saving, Cathy L. Melvin, Robert W. Gibson, Marsha Treadwell, George L. Jackson, Allison A. King, Victor R. Gordeuk, Barbara Kroner, Lewis L. Hsu, Sickle Cell Disease Implementation Consortium

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“The project did not come to us with a solution”: Perspectives of research teams on implementing a study about electronic health record-embedded individualized pain plans for emerg... by Ana A. Baumann, Jane S. Hankins, Lewis L. Hsu, Robert W. Gibson, Lynne D. Richardson, Marsha Treadwell, Jeffrey A. Glassberg, Sarah Bourne, Lingzi Luo, Rita V. Masese, Terri Demartino, Judith Nocek, Elizabeth Taaffe, Sierra Gollan, Ome-Ollin Ruiz, Chinonyelum Nwosu, Nai Qashou, Aimee S. James, Paula Tanabe, Allison A. King

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