日期:
2020 年 — 2026 年
2020
2021
2022
2023
2024
2025
2026
影响因子:

Effects of rare kidney diseases on kidney failure: a longitudinal analysis of the UK National Registry of Rare Kidney Diseases (RaDaR) cohort

罕见肾脏疾病对肾衰竭的影响:英国国家罕见肾脏疾病登记处(RaDaR)队列的纵向分析

Wong, Katie; Pitcher, David; Braddon, Fiona; Downward, Lewis; Steenkamp, Retha; Annear, Nicholas; Barratt, Jonathan; Bingham, Coralie; Chrysochou, Constantina; Coward, Richard J; Game, David; Griffin, Sian; Hall, Matt; Johnson, Sally; Kanigicherla, Durga; Karet Frankl, Fiona; Kavanagh, David; Kerecuk, Larissa; Maher, Eamonn R; Moochhala, Shabbir; Pinney, Jenny; Sayer, John A; Simms, Roslyn; Sinha, Smeeta; Srivastava, Shalabh; Tam, Frederick W K; Turner, Andrew Neil; Walsh, Stephen B; Waters, Aoife; Wilson, Patricia; Wong, Edwin; Taylor, Christopher Mark; Nitsch, Dorothea; Saleem, Moin; Bockenhauer, Detlef; Bramham, Kate; Gale, Daniel P

Description and Cross-Sectional Analyses of 25,880 Adults and Children in the UK National Registry of Rare Kidney Diseases Cohort

对英国国家罕见肾病登记队列中 25,880 名成人和儿童的描述和横断面分析

Wong, Katie; Pitcher, David; Braddon, Fiona; Downward, Lewis; Steenkamp, Retha; Masoud, Sherry; Annear, Nicholas; Barratt, Jonathan; Bingham, Coralie; Coward, Richard J; Chrysochou, Tina; Game, David; Griffin, Sian; Hall, Matt; Johnson, Sally; Kanigicherla, Durga; Karet Frankl, Fiona; Kavanagh, David; Kerecuk, Larissa; Maher, Eamonn R; Moochhala, Shabbir; Pinney, Jenny; Sayer, John A; Simms, Roslyn; Sinha, Smeeta; Srivastava, Shalabh; Tam, Frederick W K; Thomas, Kay; Turner, A Neil; Walsh, Stephen B; Waters, Aoife; Wilson, Patricia; Wong, Edwin; Sy, Karla Therese L; Huang, Kui; Ye, Jamie; Nitsch, Dorothea; Saleem, Moin; Bockenhauer, Detlef; Bramham, Kate; Gale, Daniel P

Preferences for coordinated care for rare diseases: discrete choice experiment

罕见病协同照护偏好:离散选择实验

Morris, Stephen; Walton, Holly; Simpson, Amy; Leeson-Beevers, Kerry; Bloom, Lara; Hunter, Amy; Ramsay, Angus I G; Fulop, Naomi J; Chitty, Lyn S; Kai, Joe; Sutcliffe, Alastair G; Kokocinska, Maria; Kerecuk, Larissa; Taylor, Christine A; Ng, Pei Li

Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

英国罕见病患者协调护理经验:患者、护理人员和医疗保健专业人员的横断面调查

Walton, Holly; Ng, Pei Li; Simpson, Amy; Bloom, Lara; Chitty, Lyn S; Fulop, Naomi J; Hunter, Amy; Jones, Jennifer; Kai, Joe; Kerecuk, Larissa; Kokocinska, Maria; Leeson-Beevers, Kerry; Parkes, Sharon; Ramsay, Angus I G; Sutcliffe, Alastair; Taylor, Christine; Morris, Stephen

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study

为罕见病患者构建护理协调分类体系:一项定性研究

Walton, Holly; Simpson, Amy; Ramsay, Angus I G; Hudson, Emma; Hunter, Amy; Jones, Jennifer; Ng, Pei Li; Leeson-Beevers, Kerry; Bloom, Lara; Kai, Joe; Kerecuk, Larissa; Kokocinska, Maria; Sutcliffe, Alastair G; Morris, Stephen; Fulop, Naomi J

Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

患者和临床医生对罕见病患者管理中患者报告结局指标(PROMs)的看法:一项定性研究

Aiyegbusi, Olalekan Lee; Isa, Fatima; Kyte, Derek; Pankhurst, Tanya; Kerecuk, Larissa; Ferguson, James; Lipkin, Graham; Calvert, Melanie

A step-wise approach for establishing a multidisciplinary team for the management of tuberous sclerosis complex: a Delphi consensus report

建立结节性硬化症多学科管理团队的分步方法:德尔菲共识报告

Auvin, Stéphane; Bissler, John J; Cottin, Vincent; Fujimoto, Ayataka; Hofbauer, Günther F L; Jansen, Anna C; Jóźwiak, Sergiusz; Kerecuk, Larissa; Kingswood, J Christopher; Moavero, Romina; Torra, Roser; Villanueva, Vicente

Tuberous Sclerosis Complex (TSC): Expert Recommendations for Provision of Coordinated Care

结节性硬化症(TSC):专家关于提供协调护理的建议

Annear, Nicholas M P; Appleton, Richard E; Bassi, Zahabiyah; Bhatt, Rupesh; Bolton, Patrick F; Crawford, Pamela; Crowe, Alex; Tossi, Maureen; Elmslie, Frances; Finlay, Eric; Gale, Daniel P; Henderson, Alex; Jones, Elizabeth A; Johnson, Simon R; Joss, Shelagh; Kerecuk, Larissa; Lipkin, Graham; Morrison, Patrick J; O'Callaghan, Finbar J; Cadwgan, Jill; Ong, Albert C M; Sampson, Julian R; Shepherd, Charles; Kingswood, J Chris

Patient reported outcome measures in rare diseases: a narrative review

罕见病患者报告结局指标:叙述性综述

Slade, Anita; Isa, Fatima; Kyte, Derek; Pankhurst, Tanya; Kerecuk, Larissa; Ferguson, James; Lipkin, Graham; Calvert, Melanie

Factor H autoantibody is associated with atypical hemolytic uremic syndrome in children in the United Kingdom and Ireland

在英国和爱尔兰,H因子自身抗体与儿童非典型溶血性尿毒综合征相关。

Brocklebank, Vicky; Johnson, Sally; Sheerin, Thomas P; Marks, Stephen D; Gilbert, Rodney D; Tyerman, Kay; Kinoshita, Meredith; Awan, Atif; Kaur, Amrit; Webb, Nicholas; Hegde, Shivaram; Finlay, Eric; Fitzpatrick, Maggie; Walsh, Patrick R; Wong, Edwin K S; Booth, Caroline; Kerecuk, Larissa; Salama, Alan D; Almond, Mike; Inward, Carol; Goodship, Timothy H; Sheerin, Neil S; Marchbank, Kevin J; Kavanagh, David