Zobrazeno 1 - 10
of 147
pro vyhledávání: '"Jo Anne Nakagawa"'
Autor:
Dale C. Hesdorffer, PhD, Barbara L. Kroner, PhD, Jing Shen, PhD, Kathleen Farrell, MB, BCh, BAO, Steve Roberds, PhD, Brandy Fureman, PhD, Brianne McDonald, Lynn Egan, Monika Jones, Monica Weldon, Michael Harris, Kim Rice, Vinez Campbell, Juliann Brandish, Cindy Kercheval, Nichole Villas, Mary Ann Meskis, Vanessa Vogel-Farley, Ilene Miller, JD, Mike Bartenhagen, Heidi Grabenstatter, PhD, Karen Utley, Paige Nues, Angela Cherry, Gina Vozenilek, Scotty Sims, Tracy Dixon Salazar, PhD, Christina SanInocencio, MS, Stephanie Forman, Nora Wong, Kim Bischoff, Julie Walters, Megan O’Boyle, Geraldine Bliss, Audrey Davidow, Lisa Schoyer, Yssa DeWoody, PhD, Kira Wagner, Michael Arcieri, Amber Freed, Kim Nye, Jo Anne Nakagawa, JayEtta Hecker
Publikováno v:
The Journal of Pediatrics: X, Vol 2, Iss , Pp 100021- (2020)
Objective: To evaluate the impact of pediatric sleep disturbances and night-time seizure monitoring of children with rare epilepsy syndromes on the sleep quality and mental health of caregivers. Study design: A cross-sectional study was conducted usi
Externí odkaz:
https://doaj.org/article/4d344e0f844b48a68a42cce3eb0d52ce
Autor:
Anne M. Rentz, Anne M. Skalicky, Zhimei Liu, David W. Dunn, Michael D. Frost, Jo Anne Nakagawa, Judith Prestifilippo, Qayyim Said, James W. Wheless
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 2, Iss 1, Pp 1-9 (2018)
Abstract Background Tuberous sclerosis complex (TSC) is a rare genetic disorder characterized by benign tumors in multiple organs, including non-cancerous kidney lesions known as renal angiomyolipomas. This study’s objective is to describe the age-
Externí odkaz:
https://doaj.org/article/5fd98539630c4b718d3974af881af708
Publikováno v:
Orphanet Journal of Rare Diseases. 17
Background Facial angiofibroma is the most predominant cutaneous manifestation of tuberous sclerosis complex (TSC), a rare autosomal dominant genetic disorder impacting the mechanistic target of rapamycin (mTOR). Facial angiofibroma can bleed spontan
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f754322ef44cdd3bb170c00112b2f128
https://doi.org/10.1186/s13023-022-02496-2
https://doi.org/10.1186/s13023-022-02496-2
Autor:
James W. Wheless, Jo Anne Nakagawa, Anne Skalicky, Zhimei Liu, Judith Prestifilippo, Qayyim Said, Michael Frost, Anne M. Rentz, David W. Dunn
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 2, Iss 1, Pp 1-9 (2018)
Journal of Patient-Reported Outcomes
Journal of Patient-Reported Outcomes
Background Tuberous sclerosis complex (TSC) is a rare genetic disorder characterized by benign tumors in multiple organs, including non-cancerous kidney lesions known as renal angiomyolipomas. This study’s objective is to describe the age-stratifie
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::afcaecf6eb74cbf09d952ab99dc610f6
http://link.springer.com/article/10.1186/s41687-018-0055-4
http://link.springer.com/article/10.1186/s41687-018-0055-4
Publikováno v:
Journal of Child Neurology. 32:1092-1098
Utilizing the multicenter TSC (tuberous sclerosis complex) Natural History Database including 2034 subjects, this study aimed to identify predictors of drug-resistant epilepsy in TSC. Basic epilepsy data were available for 1965 individuals in the dat
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::077de12a441795b7e595fde5704d44c7
https://doi.org/10.1177/0883073817737446
https://doi.org/10.1177/0883073817737446
Autor:
Ilene Miller, Amber Freed, Yssa DeWoody, Kim Nye, Karen Utley, Julie Walters, Heidi L. Grabenstatter, JayEtta Hecker, Jo Anne Nakagawa, Monica Weldon, Mary Ann Meskis, Cindy Kercheval, Dale C. Hesdorffer, Gina Vozenilek, Barbara Kroner, Monika Jones, Vinez Campbell, Nora Wong, Geraldine Bliss, Audrey Davidow, Michael R. Harris, Kira Wagner, Megan O’Boyle, Mike Bartenhagen, Scotty Sims, Kim Rice, Lisa Schoyer, Nichole Villas, Kim Bischoff, Jing Shen, Christina SanInocencio, Kathleen Farrell, Vanessa Vogel-Farley, Lynn Egan, Juliann Brandish, Angela Cherry, Brianne McDonald, Brandy E. Fureman, Steve Roberds, Tracy Dixon Salazar, Michael Arcieri, Paige Nues, Stephanie Forman
Publikováno v:
The Journal of Pediatrics: X, Vol 2, Iss, Pp 100021-(2020)
Objective To evaluate the impact of pediatric sleep disturbances and night-time seizure monitoring of children with rare epilepsy syndromes on the sleep quality and mental health of caregivers. Study design A cross-sectional study was conducted using
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f723d49822266836e5033d3ce31e3d0c
https://doi.org/10.1016/j.ympdx.2020.100021
https://doi.org/10.1016/j.ympdx.2020.100021
Autor:
Zhimei Liu, Anne Skalicky, Michael Frost, David W. Dunn, Qayyim Said, James W. Wheless, Jo Anne Nakagawa, Anne M. Rentz
Publikováno v:
Journal of medical economics. 21(10)
Tuberous sclerosis complex (TSC) is a multi-organ autosomal-dominant, genetic disorder with incomplete penetrance. The multiple manifestations of TSC and impacts to numerous organ systems represent significant disease, healthcare, and treatment burde
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::48d6b2de46007d0e3efac94b00ba6efe
https://pubmed.ncbi.nlm.nih.gov/29890870
https://pubmed.ncbi.nlm.nih.gov/29890870
Autor:
Nhan Thi Ho, Barbara Kroner, Zachary Grinspan, Brandy Fureman, Kathleen Farrell, Jingzhou Zhang, Janice Buelow, Dale C. Hesdorffer, Brianne McDonald, Monica Weldon, Juliann Bradish, Vanessa Vogel-Farley, Paige Nues, Tracy Dixon-Salazar, Geraldine Bliss, Yssa DeWoody, Jo Anne Nakagawa, Michael Harris, Glen Arm, Heather Jackson, Ilene Miller, Gina Vozenilek, Nora Wong, Audrey Davidow, Kira Wagner, JayEtta Hecker, Lynn Egan, Heidi Grabenstatter, Mary Anne Meskis, Mike Bartenhagen, Scotty Sims, Julie Walters, Lisa Schoyer, Kim Nye
Publikováno v:
The Journal of Pediatrics. 203:249-258.e5
To describe the prevalence and characteristics of comorbidities in persons with rare epilepsies.Persons with rare epilepsies and caregivers of those affected were recruited through the Epilepsy Foundation and more than 30 rare epilepsy advocacy organ
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::3d8414b3fa41111f51f91266661bc69a
https://doi.org/10.1016/j.jpeds.2018.07.055
https://doi.org/10.1016/j.jpeds.2018.07.055
Publikováno v:
Ophthalmology. 119:1917-1923
Objective To evaluate genotype/phenotype correlations in individuals with astrocytic hamartoma (AH) and retinal achromic patch (AP) in the setting of tuberous sclerosis complex (TSC). Design Retrospective consecutive case series. Participants A total
Externí odkaz:
https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f59a48612ddb170dc21778cf83e767f2
https://doi.org/10.1016/j.ophtha.2012.03.020
https://doi.org/10.1016/j.ophtha.2012.03.020