Metadata Catalog
Natural History Data Resource
Natural History Data Resource

Dissemination

2024
Sickle Cell Disease Implementation Consortium Registry (SCDIC) Data in BioData Catalyst
Tabitha Hendershot
YouTube (2024, September 18)
The clinical spectrum of HbSC sickle cell disease-not a benign condition.
Nelson, M., Noisette, L., Pugh, N., Gordeuk, V., Hsu, L. L., Wun, T., Shah, N., Glassberg, J., Kutlar, A., Hankins, J. S., King, A. A., Brambilla, D., & Kanter, J.
British journal of haematology, 205(2), 653-663. https://doi.org/10.1111/bjh.19523
Mortality in adults with sickle cell disease: Results from the sickle cell disease implementation consortium (SCDIC) registry.
Njoku, F., Pugh, N., Brambilla, D., Kroner, B., Shah, N., Treadwell, M., Gibson, R., Hsu, L. L., Gordeuk, V. R., Glassberg, J., Hankins, J. S., Kutlar, A., King, A. A., & Kanter, J.
American journal of hematology, 99(5), 900-909. https://doi.org/10.1002/ajh.27279
Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry.
Mendez, G. G., Nocek, J. M., Brambilla, D. J., Jacobs, S., Cole, O., Kanter, J., Glassberg, J., Saving, K. L., Melvin, C. L., Gibson, R. W., Treadwell, M., Jackson, G. L., King, A. A., Gordeuk, V. R., Kroner, B., Hsu, L. L., & Sickle Cell Disease Implementation Consortium
BMC health services research, 24(1), 291. https://doi.org/10.1186/s12913-024-10717-6
2023
Burden of Aging: Health Outcomes Among Adolescents and Young Adults With Sickle Cell Disease.
Howell, K. E., Pugh, N., Longoria, J., Shah, N., Kutlar, A., Gordeuk, V. R., King, A. A., Glassberg, J., Kayle, M., Melvin, C., Treadwell, M., Hankins, J. S., & Porter, J. S.
HemaSphere, 7(8), e930. https://doi.org/10.1097/HS9.0000000000000930
Infertility and treatment-seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry.
Stevenson, E., Tanabe, P., Knisely, M., Masese, R., Bulgin, D., Preiss, L., Hankins, J. S., King, A. A., Gordeuk, V., & Shah, N.
Pediatric blood & cancer, 70(7), e30356. https://doi.org/10.1002/pbc.30356
Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease.
Harris, K. M., Preiss, L., Varughese, T., Bauer, A., Calhoun, C. L., Treadwell, M., Masese, R., Hankins, J. S., Hussain, F. A., Glassberg, J., Melvin, C. L., Gibson, R., King, A. A., & Sickle Cell Disease Implementation Consortium
JAMA network open, 6(5), e2314070. https://doi.org/10.1001/jamanetworkopen.2023.14070
Characterising the prevalence of overweight and obese status among adults with sickle cell disease.
Ibemere, S. O., Oyedeji, C. I., Preiss, L., Van Althuis, L. E., Hankins, J. S., Azul, M., Burns, E. N., Glassberg, J., Hagar, W., Hussain, F., King, A., Melvin, C., Myers, J., Snyder, A., Shah, N., Tanabe, P., & Sickle Cell Disease Implementation Consortium
British journal of haematology, 200(5), 633-642. https://doi.org/10.1111/bjh.18548
2022
An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.
Treadwell, M. J., Mushiana, S., Badawy, S. M., Preiss, L., King, A. A., Kroner, B., Chen, Y., Glassberg, J., Gordeuk, V., Shah, N., Snyder, A., Wun, T., & Sickle Cell Disease Implementation Consortium (SCDIC)
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 31(9), 2681-2694. https://doi.org/10.1007/s11136-022-03132-z
Pregnancy outcomes with hydroxyurea use in women with sickle cell disease.
Kroner, B. L., Hankins, J. S., Pugh, N., Kutlar, A., King, A. A., Shah, N. R., Kanter, J., Glassberg, J., Treadwell, M., Gordeuk, V. R., & Sickle Cell Disease Implementation Consortium
American journal of hematology, 97(5), 603-612. https://doi.org/10.1002/ajh.26495
2021
Severe Pain Profiles and Associated Sociodemographic and Clinical Characteristics in Individuals With Sickle Cell Disease.
Knisely, M. R., Tanabe, P. J., Yang, Q., Masese, R., Jiang, M., & Shah, N. R.
The Clinical journal of pain, 37(9), 669-677. https://doi.org/10.1097/AJP.0000000000000957
Patient-reported neurocognitive symptoms influence instrumental activities of daily living in sickle cell disease.
Longoria, J. N., Pugh, N. L., Gordeuk, V., Hsu, L. L., Treadwell, M., King, A. A., Gibson, R., Kayle, M., Crego, N., Glassberg, J., Melvin, C. L., Hankins, J. S., & Porter, J.
American journal of hematology, 96(11), 1396-1406. https://doi.org/10.1002/ajh.26315
Sex-based differences in the manifestations and complications of sickle cell disease: Report from the Sickle Cell Disease Implementation Consortium.
Masese, R. V., Bulgin, D., Knisely, M. R., Preiss, L., Stevenson, E., Hankins, J. S., Treadwell, M. J., King, A. A., Gordeuk, V. R., Kanter, J., Gibson, R., Glassberg, J. A., Tanabe, P., Shah, N., & Sickle Cell Disease Implementation Consortium
PloS one, 16(10), e0258638. https://doi.org/10.1371/journal.pone.0258638
Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC).
Masese, R. V., DeMartino, T., Bonnabeau, E., Burns, E. N., Preiss, L., Varughese, T., Nocek, J. M., 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
Journal of immigrant and minority health, 23(4), 725-732. https://doi.org/10.1007/s10903-020-01102-6
2020
Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.
Glassberg, J. A., Linton, E. A., Burson, K., Hendershot, T., Telfair, J., Kanter, J., Gordeuk, V. R., King, A. A., Melvin, C. L., Shah, N., Hankins, J. S., Epié, A. Y., Richardson, L. D., & Sickle Cell Disease Implementation Consortium
Orphanet journal of rare diseases, 15(1), 178. https://doi.org/10.1186/s13023-020-01457-x
Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium.
Knisely, M. R., Pugh, N., Kroner, B., Masese, R., Gordeuk, V., King, A. A., Smith, S. M., Gurney, J. G., Adams, R., Wun, T., Snyder, A., Glassberg, J., Shah, N., Treadwell, M., & Sickle Cell Disease Implementation Consortium
American journal of hematology, 95(9), 1066-1074. https://doi.org/10.1002/ajh.25880
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