Publications by Study Protocol


Baumann, A. A., Belle, S. H., James, A., & King, A. A. (2018). Specifying sickle cell disease interventions: A study protocol of the Sickle Cell Disease Implementation Consortium (SCDIC). BMC Health Services Research,18(1). doi:10.1186/s12913-018-3297-1 (PubMed) (PMC6020469)

DiMartino, L. D., Baumann, A. A., Hsu, L. L., Kanter, J. , Gordeuk, V. R., Glassberg, J. , Treadwell, M. J., Melvin, C. L., Telfair, J. , Klesges, L. M., King, A. , Wun, T. , Shah, N. , Gibson, R. W., & Hankins, J. S. (2018). The Sickle Cell Disease Implementation Consortium: Translating evidence-based guidelines into practice for sickle cell disease. American Journal of Hematology. doi:10.1002/ajh.25282 (PubMed) (PMC6503654)

Care Redesign

Hankins JS, Shah N, DiMartino L, Brambrilla D, Fernandez ME, Gibson R, Gordeuk V, 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 mHealth into the sickle cell disease care to increase hydroxyurea utilization (mESH), an efficacy and implementation study. JMIR Research Protocols [pre-print]. 07/04/2020:16319 (forthcoming/in press) doi: 10.2196/16319

Alberts N, Badawy SM, Hodges J, Estepp JH, Nwosu C, Khan H, Smeltzer M, Homayuni R, Norell S, Klesges L, Porter JS, Hankins JS. Development of a mobile app “InCharge Health” to improve adherence to hydroxyurea in sickle cell disease: A user-centered design approach. JMIR [pre-print]. doi: 10.2196/14884

Needs Assessment

Linton, E. A., Goodin, D. A., Hankins, J. S., Kanter, J., Preiss, L., Simon, J., Souffront, K., Tanabe, P., Gibson, R., Hsu, L.L. and King, A. (2020). A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department. Annals of emergency medicine76(3), S64-S72. PMID: 32928465, PMCID:PMC7511000

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. eCollection 2019. PMID: 31063506; PubMed Central PMCID: PMC6504169 (PubMed) (PMC6504169)

Hodges, J. R., Phillips, S. M., Norell, S., Nwosu, C., Khan, H., Luo, L., Badawy, S.M., King, A., Tanabe, P., Treadwell, M. and Rojas Smith, L. (2020). Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study. Blood advances4(18), 4463-4473.


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. 2020 Oct 9. doi: 10.1007/s10903-020-01102-6. Epub ahead of print. PMID: 33034793.

Glassberg JA, Linton EA, Burson K, et al. Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry. Orphanet J Rare Dis. 2020;15(1):178. Published 2020 Jul 7. 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;3(5):e206016. doi:10.1001/jamanetworkopen.2020.6016 (JAMA Network Open). PMID: 32469413, PMCID: PMC7260622

Knisely MR, Pugh N, Kroner B, et al. Patient-reported Outcomes in Sickle Cell Disease and Association with Clinical and Psychosocial Factors: Report from the Sickle Cell Disease Implementation Consortium [published online ahead of print, 2020 May 25]. Am J Hematol. 2020;10.1002/ajh.25880. doi:10.1002/ajh.25880

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. JCOM27(5).

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