Results 101 to 110 of about 64,679 (258)

The difficult discussion on the deactivation of implantable cardioverter devices at the end of life: a systematic review

ESC Heart Failure, Volume 12, Issue 2, Page 733-760, April 2025.
Abstract Implantable cardioverter defibrillators (ICDs) reliably prevent death due to life‐threatening arrhythmias; this may become less relevant in people with more severe heart failure who are reaching the end of life (EOL). This review aimed to explore the ICD deactivation process and identify ethical issues, especially around the initiation of ...
Siobhan C. Murray, Claire McNamara, Anna V. Chatzi   +2 more
wiley   +1 more source

Methodological advances in patient-centered rare disease research: the UTHealth Houston Turner Syndrome Society of the United States research registry

Orphanet Journal of Rare Diseases
Background Many different clinical specialists provide care to patients with Turner syndrome (TS), who have highly variable clinical manifestations. Therefore, a national TS registry is essential to inform a cohesive approach to healthcare and research ...
Sara Mansoorshahi, Cindy Scurlock, Scientific Advisory Board of the Turner Syndrome Society of the United States Research Registry, Siddharth K Prakash   +3 more
doaj   +1 more source

Genetic testing among patients evaluated for epilepsy surgery

Epileptic Disorders, EarlyView.
Abstract Objective Genetic testing performed to identify the underlying etiology of epilepsy has become increasingly common and is now being recommended as part of the presurgical evaluation for epilepsy surgery. This study aimed to characterize the types of genetic tests performed in patients evaluated for epilepsy surgery and assess how genetic ...
Anni Saarela, Veera‐Julia Kuronen, Oskari Timonen, Leena Jutila, Katri Silvennoinen, Annemari Kilpeläinen, Jarkko Kirjavainen, Reetta Kälviäinen   +7 more
wiley   +1 more source

The International Classification of Cognitive Disorders in Epilepsy (IC‐CoDE) Portal: An open source resource for neuropsychological research in epilepsy

Epilepsia, EarlyView.
Abstract Objective The International Classification of Cognitive Disorders in Epilepsy (IC‐CoDE) is a consensus‐based, empirically‐driven approach to standardize cognitive phenotyping in epilepsy research that has quickly garnered interest within the epilepsy community. However, manually generating IC‐CoDE phenotypes in group data is laborious and time‐
Robyn M. Busch, Tobias Brünger, Kayela Arrotta, Lisa Ferguson, Julie K. Janecek, Sara J. Swanson, Anny Reyes, Brook Hurd, Mark St. John, Carrie R. McDonald, Bruce P. Hermann, Dennis Lal   +11 more
wiley   +1 more source

Pediatric epilepsy surgery: Global survey of referral and presurgical evaluation practices

Epilepsia, EarlyView.
Abstract Objective Pediatric epilepsy surgery is well established, but contemporary global data on referral and presurgical evaluation practices are lacking. This International League Against Epilepsy (ILAE) Pediatric Epilepsy Surgery Task Force study provides an updated overview of current trends and regional differences. Methods Group‐level data were
Georgia Ramantani, J. Helen Cross, Dorottya Cserpan, Emtnan Ahemad, Javier Aparicio, Alexis Arzimanoglou, Carmen Barba, William Bingaman, Kees Braun, Richard J. Burman, James Butler, Lixin Cai, Dezhi Cao, Roberto Caraballo, Mathilde Chipaux‐Raffo, Thomas Cloppenborg, Arthur Cukiert, Cristine Mella Cukiert, Sameer Dal, Dario Englot, Noelle Enright, Aria Fallah, Sarah Ferrand Sorbets, Martha Feucht, Deepak Gill, Laura Guio Mahecha, Aris Hadjinicolaou, Tove Hallböök, A. Simon Harvey, Hans Holthausen, Yuwu Jiang, Lakshminarayanan Kannan, Kalman A. Katlowitz, Katarzyna Kotulska‐Jóźwiak, Martin Kudr, Matt Lallas, Ahsan Moosa Naduvil Valappil, Sandeep Bhagwan Patil, Tom Pieper, Nicola Specchio, Manjari Tripathi, Lejla Vendegh, Howard Weiner, Jo Wilmshurst, Mary Lou Smith, Elaine Wirrell, ILAE Pediatric Epilepsy Surgery Task Force and Study Group, Fabrice Bartolomei, Juan Carlos Benedetti Isaac, Poodipedi Sarat Chandra, Mary Connoly, Daniel Curry, Vicki Deli‐Peri, Luca De Palma, Nabeel Diab, Petia Dimova, Carolina Munoz Castro, Georg Dorfmüller, Jana Domínguez, Gianluca D'Onofrio, Christin Eltze, Johannes M. Nico Enslin, András Fogarasi, Siby Gopinath, Renzo Guerrini, Giulia Nobile, Masaki Iwasaki, Sita Jayalakshmi, Takayuki Kikuchi, Noritsugu Kunihiro, Paweł Kowalczyk, Niklaus Krayenbühl, Pavel Kršek, Thilo Kalbhenn, Kensuke Kawai, Cassia Maniquis, Wim Otte, María Ángeles Pérez‐Jiménez, Juan Carlos Pérez‐Poveda, Catherine Riney, Jonathan Roth, Sabine Rona, Karl Rössler, Olga Teo, Oana Tarta Arsene, Laura Tassi, Hartlieb Till, T S Dhanya, Catalina Soto Órdenes, Piradee Suwanpakdee, Steffen Syrbe, Nigel Peter Symss, Jay Shetty, Dilşad Türkdoğan, Takehiro Uda, Naotaka Usui, Vrajesh Udani, Jithangi Wanigasinghe, Yi Wang   +98 more
wiley   +1 more source

Enhancing Clinical Data Management Through Barcode Integration and Research Electronic Data Capture: Scalable and Adaptable Implementation Study

JMIR Formative Research
BackgroundEffective data management is crucial in clinical studies for precise tracking, secure storage, and reliable analysis of samples. Traditional systems often encounter challenges like barcode recognition errors, inadequate data details, and ...
Rendong Zhang, Sophie Chiron, Regina Tyree, Kate Carson, Larry Raber, Karthik Ramadass, Chenyu Gao, Michael E Kim, Lianrui Zuo, Yike Li, Zhiyu Wan, Paul A Harris, Qi Liu, Ken S Lau, Lori A Coburn, Keith T Wilson, Yuankai Huo, Bennett A Landman, Shunxing Bao   +18 more
doaj   +1 more source

Are comorbid sleep disorders associated with higher risk for sudden unexpected death in epilepsy? Observations from a Canadian epilepsy clinic

Epilepsia, EarlyView.
Abstract Objective Pooled mortality is nearly three times higher in people with epilepsy (PWE). Approximately 80% of sudden unexpected death in epilepsy (SUDEP) events occur during sleep, and primary sleep disorders are prevalent in the general population and PWE.
Marion Lazaj, Ellen Lee, Tristan Derry, Helen Driver, Gavin P. Winston, Lysa Boissé Lomax, Ana Johnson, Garima Shukla   +7 more
wiley   +1 more source

Pediatric epilepsy surgery: Global survey of invasive explorations

Epilepsia, EarlyView.
Abstract Objective Invasive presurgical evaluation plays a key role in pediatric epilepsy surgery, particularly in magnetic resonance imaging (MRI)‐negative cases, by guiding resective, disconnective, or ablative procedures. This International League Against Epilepsy (ILAE) Pediatric Epilepsy Surgery Taskforce study provides an updated global overview ...
Georgia Ramantani, Martha Feucht, Dorottya Cserpan, Javier Aparicio, Alexis Arzimanoglou, Fabrice Bartolomei, William Bingaman, Kees P. J. Braun, Richard J. Burman, Dezhi Cao, Roberto Caraballo, Mathilde Chipaux‐Raffo, Thomas Cloppenborg, J. Helen Cross, Arthur Cukiert, Cristine Mella Cukiert, Daniel J. Curry, Luca De Palma, Petia Dimova, Christin Eltze, Dario J. Englot, Johannes M. Nico Enslin, Aria Fallah, Stefano Francione, Deepak Gill, Tove Hallböök, A. Simon Harvey, Hans Holthausen, Sita Jayalakshmi, Yuwu Jiang, Lakshminarayanan Kannan, Matt Lallas, Sandeep Bhagwan Patil, María Ángeles Pérez‐Jiménez, Juan Carlos Pérez‐Poveda, Tom Pieper, Sabine Rona, Victoria San Antonio‐Arce, Jay Shetty, Mary Lou Smith, Piradee Suwanpakdee, Oana Tarta Arsene, Laura Tassi, Martin Tisdall, Manjari Tripathi, Ahsan Moosa Naduvil Valappil, Howard Weiner, Elaine Wirrell, Lixin Cai, Sarah Ferrand‐Sorbets, ILAE Pediatric Epilepsy Surgery Taskforce and Study Group, Carmen Barba, Marcelo Budke, James Butler, Poodipedi Sarat Chandra, Mary Connoly, Sameer Dal, Georg Dorfmüller, Noelle Enright, Siby Gopinath, Aris Hadjinicolaou, Masaki Iwasaki, Thilo Kalbhenn, Kalman A. Katlowitz, Kensuke Kawai, Takayuki Kikuchi, Katarzyna Kotulska‐Jóźwiak, Niklaus Krayenbühl, Martin Kudr, Noritsugu Kunihiro, Cassia Maniquis, Ailsa McLellan, Carolina Munoz Castro, Lino Nobili, Wim Otte, Manas Panigrahi, Veronica Pelliccia, Karl Rössler, Siraruj Sakoolnamarka, Didier Scavarda, Catalina Soto Órdenes, Nicola Specchio, Nigel Peter Symss, TS Dhanya, Olga Teo, Hartlieb Till, Dilşad Türkdoğan, Takehiro Uda, Vrajesh Udani, Shimrit Uliel‐Sibony, Naotaka Usui, Carlos Valera, Lejla Vendegh, Yi Wang, Jithangi Wanigasinghe, Jo Wilmshurst, Oscar Zorro Guio   +96 more
wiley   +1 more source

REDCap 101 for Researchers

The purpose of this reusable learning object is to prepare researchers (including students) who are first-time REDCap users to use REDCap confidently in their upcoming research. REDCap is a web-based data collection application used by more than 8,000 institutions worldwide.
openaire   +2 more sources

Effectiveness and tolerability of fenfluramine in pediatric and adult patients with developmental and epileptic encephalopathies: A multicenter, retrospective, real‐world clinical‐practice study

Epilepsia, EarlyView.
Abstract Objective Developmental and epileptic encephalopathies (DEEs) are characterized by drug‐resistant seizures and developmental slowing/regression. We examined the efficacy and tolerability of fenfluramine (FFA) in pediatric and adult patients with Lennox–Gastaut syndrome (LGS), Dravet syndrome (DS), and other DEEs.
Vicente Villanueva, Elena González‐Alguacil, Patricia Smeyers, Sara Hernández, Victor Soto‐Insuga, Alejandro Fernández‐Cabrera, Laura Olivié, Teresa de Santos, Beatriz Parejo, Lucas Iacampo, Belén Ortuño, Javier Aparicio, Montserrat Fuentes, Juan Rodriguez‐Uranga, Paula Martínez‐Agredano, José Carlos Estévez, Angel Aledo‐Serrano, Rocio Martin‐Alvarez, David Conejo, Belen Baena, Blanca Mercedes‐Álvarez, Yolanda López, Alba Sierra‐Marcos, Rocio Trincado‐Lamuño, Mouna Ennazeh, Jesús González de la Aleja, Julia Renau, Maria Dolores Castro‐Vilanova, Fátima Romero‐Aguilera, José M. Serratosa   +29 more
wiley   +1 more source