Results 41 to 50 of about 67,799,653 (304)

Creating a Research Data Management Service

International Journal of Digital Curation, 2013
This paper provides an overview of the elements required to create a sustainable research data management (RDM) service. The paper summarises key learning and lessons learnt from the University of Nottingham’s project to create an RDM service for researchers.
openaire   +8 more sources

Provider and Parent Perspectives on Prioritizing the “Asking and Monitoring” Pediatric Cancer Psychosocial Standards of Care

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background The Standards for Psychosocial Care for Children with Cancer and Their Families (“Standards”) are evidence‐based guidelines for psychosocial care in pediatric oncology. Care related to the three “Asking and Monitoring” Standards—Assessment of Psychosocial Needs, Assessment of Financial Needs, and Monitoring Neurocognitive Problems ...
Julia B. Tager, Natalie Koskela‐Staples, Emily M. Pariseau, Michele Scialla, Kimberly Buff, Lori Wiener, Victoria Sardi Brown, Anne E. Kazak, Kimberly S. Canter   +8 more
wiley   +1 more source

Academic Data Research Services Alliance: Bridging the Gap Between Data and Discovery [PDF]

, 2002
Numeric and spatial data are made available to users by various units in universities today. Improving access and utilization of data requires creation of shared standards and policies and the building of formal relationships between these units.
Spurling, Loretta, Warner, Beth Forrest, Stephens, Denise   +2 more
core   +1 more source

Quality of life in Saudi Arabia: a patient-reported outcome measurement information system (PROMIS) – 10 global health study

BMC Public Health
Background Measuring the quality of life of a population provides a baseline for future comparisons and is essential for decision-makers, especially regarding resource allocation.
Rami Al-Jafar, Razan AlGhassab, Haya M. Alzeer, Abdullah Al-Zeer, Mohammed S. Aldossary, Weam M. Banjar, Esraa Alnazzawi, Tala Althenayan, Dana Alotaibi, Abdulaziz Aljandal, Ahmed Alkhalifah, Shahad M. Alhajri, Malak Almasoud, Meshari Alnuwaiser, Abdulrahman Aljumah, Deemah Alabdulaali, Fahad Alsaawi, Khalid Alrajhi   +17 more
doaj   +1 more source

Global Efforts to Reduce Paediatric Cancer Care Disparities in Radiotherapy: A Decade Change

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background We present an update on the status, needs and challenges faced by paediatric imaging and radiotherapy (RT) programmes globally after a previous survey conducted by the International Atomic Energy Agency (IAEA) 10 years prior. Methods We developed and distributed a 121‐question survey to radiation oncologists, medical physicists and ...
Raymond B. Mailhot Vega, Daniel J. Indelicato, Jeanette Parkes, Natia Esiashvili, Josué Hernández Benítez, Miriam Mikhail‐Lette, Olivera Cirajc Bjelac, Daniel Berger, Eva Ciurana, Yavuz Anacak, Lisbeth Cordero‐Mendez   +10 more
wiley   +1 more source

Neuropsychological and Educational Outcomes in Shwachman–Diamond Syndrome—A Report From the North American Shwachman–Diamond Syndrome Registry

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Shwachman–Diamond syndrome (SDS) is a rare autosomal recessive ribosomopathy characterized by bone marrow failure and multisystem involvement, with emerging evidence of associated neurocognitive impairment. Methods We conducted a retrospective study of 240 individuals with biallelic Shwachman–Bodian–Diamond syndrome (SBDS) mutations
Jane Koo, Melissa Gerstle, Leah Cheng, Richard Cooper, Katherine Coyne, Claire Dusa, Naomi E. Joffe, Diana Schwarz, Sarah Steltz, Akiko Shimamura, Kasiani C. Myers, Thea Quinton   +11 more
wiley   +1 more source

Data Quality Implications in Research when Transitioning to a New Electronic Medical Record

International Journal of Population Data Science
The province of Alberta has been implementing a new hospital based electronic medical record (EMR) over the past several years based on the Epic system.
Zoe Hsu, Cassandra Chisholm, Conné Lategan, Eddy Lang, Xiaoming Wang, Erik Youngson   +5 more
doaj   +1 more source

A Situational Assessment of the Diagnostic Landscape and Organizational Readiness to Implement Next‐Generation Sequencing at Two Childhood Cancer Treatment Centers in Ghana

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Purpose Next‐generation sequencing (NGS) has emerged as a promising approach to improve diagnostic accuracy, but its feasibility in low‐ and middle‐income countries remains unknown. This study characterized the diagnostic landscape and assessed organizational readiness for NGS implementation at two childhood cancer treatment centers in Accra ...
Melissa Carvalho, Emmanuella Amoako, Nihad Salifu, Lily Gloria Tagoe, Yaw Bediako, Michelle Hermiston, Catherine Segbefia   +6 more
wiley   +1 more source

Referral Practices and Utilisation of Paediatric Oncology Physiotherapy Services in Ghana: A Cross‐Sectional Study

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Introduction Physical rehabilitation is highly recognised in improving the quality of life of cancer survivors through prehabilitation, sequelae management and palliative care, yet its integration into routine care in Ghana has not been characterised, leading to potential gaps in service access.
Dorothy Ekua Adjabu, Philip Junior Nyarko, Precious Madzimbe, Kofi Adesi Kyei, Tawagidu Mohammed, Sandra Banini   +5 more
wiley   +1 more source

Beyond the Document: A Single‐Center Qualitative Study of Survivorship Care Plan Barriers and Opportunities Across Pediatric Oncology Stakeholders

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Survivorship care plans (SCPs) summarize cancer treatment and guide risk‐based follow‐up for cancer survivors, yet remain difficult to create, share, and use. Stakeholder perspectives are needed to inform usable approaches.
Molly S. Talman, Emma Fleisher, Megan E. Salwei, Debra Friedman, Laurie Novak   +4 more
wiley   +1 more source