Results 131 to 140 of about 3,361,739 (291)

Patient and Family Reported Clinical Picture of IRF2BPL‐Related Disorders

American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, EarlyView.
ABSTRACT IRF2BPL‐related disorder is a neurodevelopmental disorder caused by heterozygous variants in the IRF2BPL (Interferon Regulatory Factor 2 Binding Protein‐Like) gene. The few reports available in the literature suggest that common symptoms include developmental delay, intellectual disability, and developmental regression.
Zoe Goldstone‐Joubert, Danielle M. Pascual, Laurie Anne Bailey, Loren D. M. Peña, Paul C. Marcogliese   +4 more
wiley   +1 more source

Bladder Cancer Patient Advocacy: A Global Perspective

Bladder Cancer
Over the past 20 years, cancer patient advocacy groups have demonstrated that patient engagement in cancer care is essential to improving patient quality of life and outcomes.
Diane Zipursky Quale, Rick Bangs, Monica Smith, David Guttman, Tammy Northam, Andrew Winterbottom, Andrea Necchi, Edoardo Fiorini, Stephanie Demkiw   +8 more
doaj   +1 more source

The International Consortium for Arthrogryposis: A Collaborative Framework for Early Detection, Care, Research, and Education

American Journal of Medical Genetics Part C: Seminars in Medical Genetics, EarlyView.
ABSTRACT Arthrogryposis multiplex congenita (AMC) is a group of rare congenital conditions, characterized by multiple joint contractures but may involve any body system including central nervous system. AMC is etiologically heterogeneous, with over 400 genetic and many non‐genetic causes implicated in its prenatal development.
Shahrzad Nematollahi, Noa Bouzaglo, Victoria Castillo Sanchez, Johanna I. P. de‐Vries, Klaus Dieterich, Alicja Fafara, Isabel Filges, Philip Giampietro, Göknur Haliloğlu, Judith Hall, Coleman Hilton, Remco Jansen, Valentina Maestri, Carolina Navalon, Daniel Natera de Benito, Tony Pan, Ani Samargian, Bonita Sawatzky, Harold van Bosse, Paul A. Trainor, Noémi Dahan‐Oliel   +20 more
wiley   +1 more source

Understanding Arthrogryposis Multiplex Congenita (AMC) Across the Lifespan: An Integrative Review of the Adult AMC Registry's Contributions With Lived Experience Partnerships

American Journal of Medical Genetics Part C: Seminars in Medical Genetics, EarlyView.
ABSTRACT This reflective essay explores how collaborative work between researchers and adults living with Arthrogryposis Multiplex Congenita (AMC) has deepened and broadened our understanding of what it means to live with this rare condition. By intentionally integrating the lived experiences of individuals with AMC into research processes, the ...
Bonita J. Sawatzky, Megan K. MacGillivray, Tracey Schalk, William Bennett Mortenson   +3 more
wiley   +1 more source

The Legislation for Providing Animal Access in Australian Residential Aged Care: It's Not a Zoo

Australian Journal of Social Issues, EarlyView.
ABSTRACT Providing meaningful animal contact to residential aged care facility (RACF) residents is problematic due to a lack of animal policies and National Guidelines. This paper examines how Australian Legislation could influence access to animal contact in RACFs and aims to answer the question, ‘Could current Legislation facilitate the development ...
Wendy Newton, Tania Signal, Jenni A. Judd   +2 more
wiley   +1 more source

Patient Advocacy - Patient Centered Care

, 2017
Trabalho de Projeto do Mestrado Integrado em Medicina apresentado à Faculdade de MedicinaIntrodução: A Medicina Centrada no Doente (MCD) ou Cuidados Centrados no Doente (CCD) é um modelo amplamente utilizado no sistema de saúde moderno.
Oliveira, Joana Filipa Pinto São Martinho
core  

Implementing Indigenous Data Sovereignty in Australia: A Five‐Phase Framework for Indigenous Data Governance

Australian Journal of Social Issues, EarlyView.
ABSTRACT This article presents the development of a five‐phase Indigenous Data Governance (IDGov) Framework in Australia, focusing on partnerships between the Aboriginal Community Controlled Health Organisation (ACCHO) sector and non‐Indigenous health entities.
Jacob Prehn, Michael A. Guerzoni, Maggie Walter, Gawaian Bodkin‐Andrews, Bobby Maher   +4 more
wiley   +1 more source

The Culturally and Linguistically Diverse Workforce in Early Childhood Education: Findings From a National Survey of Australian Centre‐Based Services

Australian Journal of Social Issues, EarlyView.
ABSTRACT Culturally responsive early childhood education (ECE) environments can increase child and family participation, enhance service quality, and improve developmental outcomes for children. Educators from culturally and linguistically diverse (CALD) backgrounds contribute to inclusive ECE and are crucial for addressing workforce shortages.
Sene Gide, Linda Harrison, Sandie Wong, Frances Press, Belinda Davis   +4 more
wiley   +1 more source

Strengthening Treaty Understanding: The Role of Education in Building Durable Indigenous–State Agreements

Australian Journal of Social Issues, EarlyView.
ABSTRACT Education is a central mechanism for ensuring that Indigenous–State treaties are understood, supported and endure through political change. Public knowledge shapes the negotiation, acceptance, implementation and long‐term stability of agreements. In Australia, however, treaty knowledge remains fragmented.
Jacob Prehn, Harry Hobbs, Jessica Horton
wiley   +1 more source

Patient Advocacy: The Nurse Practitioner's Role

, 2004
Patient advocacy is a term used frequently in nursing literature. This term assumes the presence of underlying characteristics and abilities in the nurse in order to be a patient advocate.
Karen J. Geiger
core