Publications by Study Protocol

Overarching (2)

Baumann AA, Belle SH, James A, King AA; Sickle Cell Disease Implementation Consortium. Specifying sickle cell disease interventions: a study protocol of the Sickle Cell Disease Implementation Consortium (SCDIC). BMC Health Serv Res. 2018 Jun 27;18(1):500. doi: 10.1186/s12913-018-3297-1. PMID: 29945631; PMCID: PMC6020469.

DiMartino LD, Baumann AA, Hsu LL, Kanter J, Gordeuk VR, Glassberg J, Treadwell MJ, Melvin CL, Telfair J, Klesges LM, King A, Wun T, Shah N, Gibson RW, Hankins JS; Sickle Cell Disease Implementation Consortium. The sickle cell disease implementation consortium: Translating evidence-based guidelines into practice for sickle cell disease. Am J Hematol. 2018 Dec;93(12):E391-E395. doi: 10.1002/ajh.25282. Epub 2018 Oct 17. PMID: 30203558; PMCID: PMC6503654.


Care Redesign (MESH) (5)

Bhatt N, Calhoun C, Longoria J, Nwosu C, Howell KE, Varughese T, Kang G, Jacola LM, Hankins JS, King A. Health literacy correlates with abbreviated full-scale IQ in adolescent and young adults with sickle cell disease. Pediatr Blood Cancer. 2023 May;70(5):e30281. doi: 10.1002/pbc.30281. Epub 2023 Mar 2. PMID: 36861391.

Smeltzer MP, Howell KE, Treadwell M, Preiss L, King AA, Glassberg JA, Tanabe P, Badawy SM, DiMartino L, Gibson R, Kanter J, Klesges LM, Hankins JS; Sickle Cell Disease Implementation Consortium. Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA. BMJ Open. 2021 Nov 17;11(11):e050880. doi: 10.1136/bmjopen-2021-050880. PMID: 34789492; PMCID: PMC8601067.

Hankins JS, Shah N, DiMartino L, Brambilla D, Fernandez ME, Gibson RW, Gordeuk VR, Lottenberg R, Kutlar A, Melvin C, Simon J, Wun T, Treadwell M, Calhoun C, Baumann A, Potter MB, Klesges L, Bosworth H; Sickle Cell Disease Implementation Consortium. Integration of Mobile Health Into Sickle Cell Disease Care to Increase Hydroxyurea Utilization: Protocol for an Efficacy and Implementation Study. JMIR Res Protoc. 2020 Jul 14;9(7):e16319. doi: 10.2196/16319. PMID: 32442144; PMCID: PMC7388044.

Alberts NM, Badawy SM, Hodges J, Estepp JH, Nwosu C, Khan H, Smeltzer MP, Homayouni R, Norell S, Klesges L, Porter JS, Hankins JS. Development of the InCharge Health Mobile App to Improve Adherence to Hydroxyurea in Patients With Sickle Cell Disease: User-Centered Design Approach. JMIR Mhealth Uhealth. 2020 May 8;8(5):e14884. doi: 10.2196/14884. PMID: 32383683; PMCID: PMC7245000.

Badawy SM, DiMartino L, Brambilla D, Klesges L, Baumann A, Burns E, DeMartino T, Jacobs S, Khan H, Nwosu C, Shah N, Hankins JS; Sickle Cell Disease Implementation Consortium. Impact of the COVID-19 Pandemic on the Implementation of Mobile Health to Improve the Uptake of Hydroxyurea in Patients With Sickle Cell Disease: Mixed Methods Study. JMIR Form Res. 2022 Oct 14;6(10):e41415. doi: 10.2196/41415. PMID: 36240004; PMCID: PMC9578525.


Emergency Department (ALIGN) (1)

Luo L, King AA, Carroll Y, Baumann AA, Brambilla D, Carpenter CR, Colla J, Gibson RW, Gollan S, Hall G, Klesges L, Kutlar A, Lyon M, Melvin CL, Norell S, Mueller M, Potter MB, Richesson R, Richardson LD, Ryan G, Siewny L, Treadwell M, Zun L, Armstrong-Brown J, Cox L, Tanabe P. Electronic Health Record-Embedded Individualized Pain Plans for Emergency Department Treatment of Vaso-occlusive Episodes in Adults With Sickle Cell Disease: Protocol for a Preimplementation and Postimplementation Study. JMIR Res Protoc. 2021 Apr 16;10(4):e24818. doi: 10.2196/24818. PMID: 33861209; PMCID: PMC8087964.


Registry (13)

Njoku F, Pugh N, Brambilla D, Kroner B, Shah N, Treadwell M, Gibson R, Hsu LL, Gordeuk VR, Glassberg J, Hankins JS, Kutlar A, King AA, Kanter J. Mortality in adults with sickle cell disease: Results from the sickle cell disease implementation consortium (SCDIC) registry. Am J Hematol. 2024 May;99(5):900-909. doi: 10.1002/ajh.27279. Epub 2024 Mar 7. PMID: 38450756; PMCID: PMC11001513.

Ibemere SO, Oyedeji CI, Preiss L, Van Althuis LE, Hankins JS, Azul M, Burns EN, Glassberg J, Hagar W, Hussain F, King A, Melvin C, Myers J, Snyder A, Shah N, Tanabe P; Sickle Cell Disease Implementation Consortium. Characterising the prevalence of overweight and obese status among adults with sickle cell disease. Br J Haematol. 2023 Mar;200(5):633-642. doi: 10.1111/bjh.18548. Epub 2022 Nov 16. PMID: 36382420; PMCID: PMC9957798.

Treadwell MJ, Mushiana S, Badawy SM, Preiss L, King AA, Kroner B, Chen Y, Glassberg J, Gordeuk V, Shah N, Snyder A, Wun T; Sickle Cell Disease Implementation Consortium (SCDIC). An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model. Qual Life Res. 2022 Sep;31(9):2681-2694. doi: 10.1007/s11136-022-03132-z. Epub 2022 Apr 21. PMID: 35445915; PMCID: PMC9356962.

Phillips S, Chen Y, Masese R, Noisette L, Jordan K, Jacobs S, Hsu LL, Melvin CL, Treadwell M, Shah N, Tanabe P, Kanter J. Perspectives of individuals with sickle cell disease on barriers to care. PLoS One. 2022 Mar 23;17(3):e0265342. doi: 10.1371/journal.pone.0265342. PMID: 35320302; PMCID: PMC8942270.

Kroner BL, Hankins JS, Pugh N, Kutlar A, King AA, Shah NR, Kanter J, Glassberg J, Treadwell M, Gordeuk VR; Sickle Cell Disease Implementation Consortium. Pregnancy outcomes with hydroxyurea use in women with sickle cell disease. Am J Hematol. 2022 May;97(5):603-612. doi: 10.1002/ajh.26495. Epub 2022 Feb 17. PMID: 35142007; PMCID: PMC8986611.

Knisely MR, Tanabe PJ, Walker JKL, Yang Q, Shah NR. Severe Persistent Pain and Inflammatory Biomarkers in Sickle Cell Disease: An Exploratory Study. Biol Res Nurs. 2022 Jan;24(1):24-30. doi: 10.1177/10998004211027220. Epub 2021 Jun 30. PMID: 34189962.

Knisely MR, Tanabe PJ, Yang Q, Masese R, Jiang M, Shah NR. Severe Pain Profiles and Associated Sociodemographic and Clinical Characteristics in Individuals With Sickle Cell Disease. Clin J Pain. 2021 Sep 1;37(9):669-677. doi: 10.1097/AJP.0000000000000957. PMID: 34265788; PMCID: PMC8373671.

Longoria JN, Pugh NL, Gordeuk V, Hsu LL, Treadwell M, King AA, Gibson R, Kayle M, Crego N, Glassberg J, Melvin CL, Hankins JS, Porter J. Patient-reported neurocognitive symptoms influence instrumental activities of daily living in sickle cell disease. Am J Hematol. 2021 Nov 1;96(11):1396-1406. doi: 10.1002/ajh.26315. Epub 2021 Aug 24. PMID: 34350622; PMCID: PMC8855994.

Masese RV, Bulgin D, Knisely MR, Preiss L, Stevenson E, Hankins JS, Treadwell MJ, King AA, Gordeuk VR, Kanter J, Gibson R, Glassberg JA, Tanabe P, Shah N; Sickle Cell Disease Implementation Consortium. Sex-based differences in the manifestations and complications of sickle cell disease: Report from the Sickle Cell Disease Implementation Consortium. PLoS One. 2021 Oct 29;16(10):e0258638. doi: 10.1371/journal.pone.0258638. PMID: 34714833; PMCID: PMC8555833.

Masese RV, DeMartino T, Bonnabeau E, Burns EN, Preiss L, Varughese T, Nocek JM, Lasley P, Chen Y, Davila C, Nwosu C, Scott S, Bowman L, Gordon L, Clesca C, Peters-Lawrence M, Melvin C, Shah N, Tanabe P; SCD Implementation Consortium. Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC). J Immigr Minor Health. 2021 Aug;23(4):725-732. doi: 10.1007/s10903-020-01102-6. Epub 2020 Oct 9. PMID: 33034793; PMCID: PMC8032811.

Glassberg JA, Linton EA, Burson K, Hendershot T, Telfair J, Kanter J, Gordeuk VR, King AA, Melvin CL, Shah N, Hankins JS, Epié AY, Richardson LD; Sickle Cell Disease Implementation Consortium. Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry. Orphanet J Rare Dis. 2020 Jul 7;15(1):178. doi: 10.1186/s13023-020-01457-x. PMID: 32635939; PMCID: PMC7341606.

Kanter J, Gibson R, Lawrence RH, Smeltzer MP, Pugh NL, Glassberg J, Masese RV, King AA, Calhoun C, Hankins JS, Treadwell M. Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care. JAMA Netw Open. 2020 May 1;3(5):e206016. doi: 10.1001/jamanetworkopen.2020.6016. PMID: 32469413; PMCID: PMC7260622.

Knisely MR, Pugh N, Kroner B, Masese R, Gordeuk V, King AA, Smith SM, Gurney JG, Adams R, Wun T, Snyder A, Glassberg J, Shah N, Treadwell M; Sickle Cell Disease Implementation Consortium. Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium. Am J Hematol. 2020 Sep;95(9):1066-1074. doi: 10.1002/ajh.25880. Epub 2020 Jun 29. PMID: 32449965; PMCID: PMC8141351.


Unaffiliated (2)

Mendez GG, Nocek JM, Brambilla DJ, Jacobs S, Cole O, Kanter J, Glassberg J, Saving KL, Melvin CL, Gibson RW, Treadwell M, Jackson GL, King AA, Gordeuk VR, Kroner B, Hsu LL; Sickle Cell Disease Implementation Consortium. Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry. BMC Health Serv Res. 2024 Mar 6;24(1):291. doi: 10.1186/s12913-024-10717-6. PMID: 38448911; PMCID: PMC10916176.

Lamont AE, Hsu LL, Jacobs S, Gibson R, Treadwell M, Chen Y, Lottenberg R, Axelrod K, Varughese T, Melvin C, Smith S, Chukwudozie IB, Kanter J; Sickle Cell Disease Implementation Consortium. What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease. PLoS One. 2022 Nov 11;17(11):e0272204. doi: 10.1371/journal.pone.0272204. PMID: 36367870; PMCID: PMC9651581.


Needs Assessment (6)

Masese RV, Crego N, Douglas C, Rains G, Bonnabeau E, DeMartino T, Shah N, Tanabe P. A Needs Assessment of Persons With Sickle Cell Disease in a Major Medical Center in North Carolina. N C Med J. 2021 Sep-Oct;82(5):312-320. doi: 10.18043/ncm.82.5.312. PMID: 34544765.

Crego N, Masese R, Bonnabeau E, Douglas C, Rains G, Shah N, Tanabe P. Patient Perspectives of Sickle Cell Management in the Emergency Department. Crit Care Nurs Q. 2021 Apr-Jun 01;44(2):160-174. doi: 10.1097/CNQ.0000000000000350. PMID: 33595963; PMCID: PMC8007091.

Treadwell, M. J., Jacob, E., Hessler, D., Chen, A. F., Chen, Y., Mushiana, S., Potter, M.B. and Vichinsky, E. (2020). Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies. JCOM, 27(5).

Linton EA, Goodin DA, Hankins JS, Kanter J, Preiss L, Simon J, Souffront K, Tanabe P, Gibson R, Hsu LL, King A, Richardson LD, Glassberg JA; Sickle Cell Disease Implementation Consortium. A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department. Ann Emerg Med. 2020 Sep;76(3S):S64-S72. doi: 10.1016/j.annemergmed.2020.08.013. PMID: 32928465; PMCID: PMC7511000.

Hodges JR, Phillips SM, Norell S, Nwosu C, Khan H, Luo L, Badawy SM, King A, Tanabe P, Treadwell M, Rojas Smith L, Calhoun C, Hankins JS, Porter J. Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study. Blood Adv. 2020 Sep 22;4(18):4463-4473. doi: 10.1182/bloodadvances.2020001701. Erratum in: Blood Adv. 2020 Oct 13;4(19):4822. PMID: 32941646; PMCID: PMC7509876.

Masese RV, Bulgin D, Douglas C, Shah N, Tanabe P. Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: The emergency department providers' perspective. PLoS One. 2019 May 7;14(5):e0216414. doi: 10.1371/journal.pone.0216414. PMID: 31063506; PMCID: PMC6504169.


For more information on or access to any of the data used in these publications, please send an email to scdic-publications-subcommittee@rtiresearch.org.