Results 31 to 40 of about 232,558 (307)

European Standard Clinical Practice Guideline and EXPeRT Recommendations for the Diagnosis and Management of Gastroenteropancreatic Neuroendocrine Neoplasms in Children and Adolescents

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Pediatric gastroenteropancreatic neuroendocrine neoplasms (GEP‐NENs) are extremely rare and clinically heterogeneous. Management has largely been extrapolated from adult practice. This European Standard Clinical Practice Guideline (ESCP), developed by the EXPeRT network in collaboration with adult NEN experts, provides (adult) evidence ...
Michaela Kuhlen, Calogero Virgone, Antje Redlich, Michael Abele, Ricardo Lopez‐Almaraz, Tal Ben‐Ami, Ewa Bien, Gianni Bisogno, Maja Mazic Cesen, Andrea Ferrari, Malgorzata A. Krawczyk, Yves Reguerre, Dominik T. Schneider, Ines B. Brecht, Charlotte Rigaud, Bilgehan Yalcin, Rainer Claus, Christian Vokuhl, Constantin Lapa, Jörg Fuchs, Segolene Hescot, Thomas Walter, Julien Hadoux, Daniel Orbach   +23 more
wiley   +1 more source

Combining participatory action research with sociological intervention to investigate participatory place branding

, 2020
Purpose: Place branding research has recently focused on developing more inclusive models to better capture the co-creation of place identities. This paper aims to investigate stakeholder communication interactions in place branding processes to inform ...
Fred Gale, Laura Ripoll Gonzalez, Ripoll Gonzalez, Laura, Gale, Fred   +3 more
core   +1 more source

Health‐Related Quality of Life and Symptom Severity Among Patients With PIK3CA‐Related Overgrowth Spectrum: A Mixed‐Methods Study to Understand Real‐World Experience With Alpelisib Treatment

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background PIK3CA‐related overgrowth spectrum (PROS) includes several rare overgrowth disorders resulting from somatic gain‐of‐function mutations in PIK3CA. Despite treatment advances, including the recent approval of alpelisib for PROS in the United States, literature detailing the patient experience with PROS is limited.
Vamsi Bollu, Kaitlin LaGasse, Cory D. Saucier, Kimberly Raymond, Miranda Lauher‐Charest, Lauren Crowder, Beilei Cai, Mary Lisha Paul, Denise Adams   +8 more
wiley   +1 more source

Clinical and Biological Features of Response in Resistant Neuroblastoma to 131I‐Metaiodobenzylguanidine Radiotherapy in the Anti‐GD2 Immunotherapy Era

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background 131I‐metaiodobenzylguanidine (131I‐MIBG) radiotherapy is a key treatment for relapsed and refractory (R/R) neuroblastoma (NB). Patients with R/R disease treated in the modern era are increasingly exposed to anti‐GD2 immunotherapy, which exerts selective pressure and may modify both tumor cell state and microenvironment.
Benjamin J. Lerman, Katherine K. Matthay, Fabienne Hollinger, Catriona Black, Ann A. Lazar, Miguel Pampaloni, Steven G. DuBois, Kieuhoa T. Vo   +7 more
wiley   +1 more source

Participatory democracy and participatory research

European Political Science Review
AbstractWhile normative theories of participatory democracy and practical experiences of participatory research share a common democratic commitment, the two fields have emerged and to date exist in isolation from each other. This article bridges this divide and asks what participatory democracy and participatory research can learn from one another. It
Hans Asenbaum, Sonia Bussu, Oliver Escobar, Clodagh Harris   +3 more
openaire   +2 more sources

An introduction to IPR as a Participatory Design research method [PDF]

, 2015
This paper outlines the method of Interpersonal Process Recall (IPR) as a Participatory Design method, especially in the context of design for mental health and wellbeing.
Richard Kettley, Bates, M, Kettley, S, Kettley, R, Matthew Bates, Sarah Kettley   +5 more
core   +1 more source

Hospitalization Through Families’ Eyes: Comparing Inpatient Care Quality for Children With Sickle Cell Disease and Cystic Fibrosis in Canada

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Sickle cell disease (SCD) is a chronic, inherited hemoglobinopathy that requires frequent hospitalization for disease‐related complications. Canadian data on inpatient care is limited. This study compared caregiver‐reported hospital experiences of children with SCD to those with cystic fibrosis (CF), a chronic, autosomal recessive ...
Hailey M. Zwicker, Kyle Kemp, Perri Tutelman, Sharon H. J. Hou, Paul Fairie, Maria Santana, Gregory M. T. Guilcher, Taryn Fay‐McClymont, Glenda Bendiak, Wendy Pelletier, Nicola Wright, Fiona Schulte   +11 more
wiley   +1 more source

Adolescent and parental proxy online record access: analysis of the empirical evidence based on four bioethical principles

BMC Medical Ethics
Background During recent decades, providing patients with access to their electronic health records (EHRs) has advanced in healthcare. In the European Union (EU), the General Data Protection Regulation provides individuals with the right to check their ...
Josefin Hagström, Maria Hägglund, Charlotte Blease   +2 more
doaj   +1 more source

Fuzzy cognitive mapping with Inuit women: what needs to change to improve cervical cancer screening in Nunavik, northern Quebec?

BMC Health Services Research, 2020
Background Among Canadian Inuit, cervical cancer incidence and mortality rates are up to three times higher than the Canadian average. Cervical cancer is preventable through regular screening which, in Quebec, is opportunistic and requires physical ...
Elyse Tratt, Ivan Sarmiento, Rachel Gamelin, Jeannie Nayoumealuk, Neil Andersson, Paul Brassard   +5 more
doaj   +1 more source

Ethically Researching Local Impacts of Environmental Change without Travel

Geosciences, 2021
Responses to the COVID-19 pandemic, which began in 2020, included local and international travel restrictions alongside limits on face-to-face gatherings.
Ilan Kelman
doaj   +1 more source