Zobrazeno 1 - 10
of 57
pro vyhledávání: '"Barbara Kroner"'
Autor:
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
Publikováno v:
BMC Health Services Research, Vol 24, Iss 1, Pp 1-13 (2024)
Abstract Background Adults with sickle cell disease (SCD) suffer early mortality and high morbidity. Many are not affiliated with SCD centers, defined as no ambulatory visit with a SCD specialist in 2 years. Negative social determinants of health (SD
Externí odkaz:
https://doaj.org/article/a47a4a5bbb1f4936a5174d74dd350d95
Autor:
Huaqin Pan, Cataia Ives, Meisha Mandal, Ying Qin, Tabitha Hendershot, Jen Popovic, Donald Brambilla, Jeran Stratford, Marsha Treadwell, Xin Wu, Barbara Kroner
Publikováno v:
PLoS ONE, Vol 17, Iss 12, p e0256248 (2022)
ObjectivesTo adopt the FAIR principles (Findable, Accessible, Interoperable, Reusable) to enhance data sharing, the Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) was developed to make Sickle Cell Disease (SCD) study datasets more Finda
Externí odkaz:
https://doaj.org/article/1fc047eb3f79465c8c2b4ee39f0a9be9
Autor:
Marsha J, Treadwell, Swapandeep, Mushiana, Sherif M, Badawy, Liliana, Preiss, Allison A, King, Barbara, Kroner, Yumei, Chen, Jeffrey, Glassberg, Victor, Gordeuk, Nirmish, Shah, Angela, Snyder, Theodore, Wun
Publikováno v:
Quality of Life Research. 31:2681-2694
Purpose To examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 – 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) regist
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0995d87935174317ee15e30f702c32ae
https://doi.org/10.1007/s11136-022-03132-z
https://doi.org/10.1007/s11136-022-03132-z
Autor:
Samuel F. Berkovic, John F. Kerrigan, Dale K. Hesdorffer, Clifford B. Saper, Alexis Arzimanoglou, Andreas Schulze-Bonhage, William D. Gaillard, Lisa Soeby, Nathan T. Cohen, Ilene Miller, Erica Webster, J. Helen Cross, Barbara Kroner, Arthur Cukiert
Publikováno v:
Neurology. 97:864-873
Hypothalamic hamartomas (HH) are rare, basilar developmental lesions with widespread comorbidities often associated with refractory epilepsy and encephalopathy. Imaging advances allow for early, even prenatal, detection. Genetic studies suggest mutat
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::c16e70c6175a8979de7cbfb96293aac1
https://doi.org/10.1212/wnl.0000000000012773
https://doi.org/10.1212/wnl.0000000000012773
Autor:
Moussa O. Ismail, John M. Schreiber, Adrian Bumbut, Lowell H. Frank, William D. Gaillard, Barbara Kroner
Publikováno v:
Epilepsia
OBJECTIVE: To test whether children with epilepsy have impairments in myocardial mechanics compared to controls without epilepsy. METHODS: Children with refractory epilepsy with epilepsy duration of at least 3 years underwent echocardiography includi
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b356311b9cbce7720f18f0f67256f726
https://doi.org/10.1111/epi.16652
https://doi.org/10.1111/epi.16652
Autor:
Allison A. King, Victor R. Gordeuk, James G. Gurney, Robert J. Adams, Sharon M. Smith, Norma Pugh, Nirmish Shah, Barbara Kroner, Angela Snyder, Marsha Treadwell, Jeffrey Glassberg, Mitchell R. Knisely, Theodore Wun, Rita V Masese
Publikováno v:
Am J Hematol
Understanding patient experiences, quality of life, and treatment needs in individuals with sickle cell disease (SCD) is essential in promoting health and well-being. We used measures from the Adult Sickle Cell Quality of Life Measurement Information
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b9757ef4bd0c706a065b781b46e13618
https://doi.org/10.1002/ajh.25880
https://doi.org/10.1002/ajh.25880
Autor:
Joan M. Griffin, Sandra L. Wong, Betina Yanez, Barbara Kroner, Liliana Preiss, Roxanne E. Jensen, Ashley Wilder Smith, Jennifer Popovic, Jessica Austin, Ann Marie Flores, Sandra Mitchell, Jessica Bian, Michael J. Hassett, Raymond Osarogiagbon, Andrea L. Cheville
Publikováno v:
Journal of Clinical Oncology. 40:419-419
419 Background: The patient portal is part of an electronic health record (EHR) that allows patients to communicate with their healthcare team. The portal also provides a platform for patients to receive and complete symptom surveys that can be direc
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::bdd891492ff149b597343217613eb9ab
https://doi.org/10.1200/jco.2022.40.28_suppl.419
https://doi.org/10.1200/jco.2022.40.28_suppl.419
Autor:
Tabitha Hendershot, J. Popovic, Marsha Treadwell, Cataia Ives, Huaqin Pan, J. Stratford, Y. Qin, Barbara Kroner, X. Wu, M. Mandal, Donald Brambilla
ObjectivesTo adopt the FAIR principles (Findable, Accessible, Interoperable, Reusable) to enhance data sharing, the Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) was developed to make Sickle Cell Disease (SCD) study datasets more Finda
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_________::bc4b6c1e8cf26a4341df7323d49ef277
https://doi.org/10.1101/2021.08.13.456291
https://doi.org/10.1101/2021.08.13.456291
Autor:
Huaqin Pan, Cataia Ives, Meisha Mandal, Ying Qin, Tabitha Hendershot, Jen Popovic, Donald Brambilla, Jeran Stratford, Marsha Treadwell, Xin Wu, Barbara Kroner
Publikováno v:
PloS one. 17(12)
Objectives To adopt the FAIR principles (Findable, Accessible, Interoperable, Reusable) to enhance data sharing, the Cure Sickle Cell Initiative (CureSCi) MetaData Catalog (MDC) was developed to make Sickle Cell Disease (SCD) study datasets more Find
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::228f6945cc4e543e42e010120593bac4
https://pubmed.ncbi.nlm.nih.gov/36508412
https://pubmed.ncbi.nlm.nih.gov/36508412
Publikováno v:
Epilepsy & Behavior. 92:256-259
Several American Academy of Neurology (AAN) epilepsy practice guidelines recommend conversations that neurologists should have with patients and their parents. We sought to determine whether parents of pediatric patients with epilepsy had knowledge o
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0590c5acaadf7ba747bb39ee99f6b858
https://doi.org/10.1016/j.yebeh.2019.01.009
https://doi.org/10.1016/j.yebeh.2019.01.009