Publications by Study Protocol

Overarching (2)

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 (MESH) (3)

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.


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 (12)

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. 2022 Nov 16. doi: 10.1111/bjh.18548. Epub ahead of print. PMID: 36382420.

Treadwell, M.J., Mushiana, S., Badawy, S.M. et al. An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model. Qual Life Res (2022). https://doi.org/10.1007/s11136-022-03132-z. PMID: 35445915

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.

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 Feb 10. doi: 10.1002/ajh.26495. Epub ahead of print. PMID: 35142007.

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, et al. Sex-based differences in the manifestations and complications of sickle cell disease: Report from the Sickle Cell Disease Implementation Consortium. PLoS One. 2021;16(10):e0258638. Published 2021 Oct 29. doi:10.1371/journal.pone.0258638

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


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, 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

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. https://pubmed.ncbi.nlm.nih.gov/32941646/

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)


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.