Results 11 to 20 of about 6,207,956 (217)

Development of Novel Patient-Reported Outcome (PRO) and Observer-Reported Outcome (ObsRO) Instruments in Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA): ViSIO-PRO and ViSIO-ObsRO

Ophthalmology and Therapy, 2023
Introduction Retinitis pigmentosa (RP) and Leber congenital amaurosis (LCA) are rare inherited retinal degenerative disorders resulting in visual impairments and impacts on patients’ vision-dependent activities of daily living (ADL), mobility and distal ...
Isabelle Audo, Francesco Patalano, Christel Naujoks, Claudio Spera, M. Dominik Fischer, Jane Green, Christine Kay, Todd Durham, Nicola Williamson, Helena Bradley, Melissa Barclay, Kieran Boparai, Judit Banhazi   +12 more
doaj   +1 more source

Psychometric Validation of the ViSIO-PRO and ViSIO-ObsRO in Retinitis Pigmentosa and Leber Congenital Amaurosis

Ophthalmology and Therapy, 2023
Introduction Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA) are rare inherited retinal degenerative disorders. The Visual Symptom and Impact Outcomes patient-reported outcome (ViSIO-PRO) and observer-reported outcome (ViSIO-ObsRO ...
M. Dominik Fischer, Francesco Patalano, Christel Naujoks, Judit Banhazi, Christine Bouchet, Paul O’Brien, Christine Kay, Jane Green, Todd Durham, Helena Bradley, Nicola Williamson, Melissa Barclay, Joel Sims, Isabelle Audo   +13 more
doaj   +1 more source

Understanding and measuring symptoms and health status in asthma COPD overlap: content validity of the EXACT and SGRQ

Journal of Patient-Reported Outcomes, 2018
Background Asthma-chronic obstructive pulmonary disease overlap (ACO) differs from asthma and chronic obstructive pulmonary disease (COPD) in demographics, phenotypic characteristics and outcomes, yet the patient experience of ACO is poorly characterized.
Linda Nelsen, Adam Gater, Charlotte Panter, Chloe Tolley, Laurie Lee, Steven Pascoe   +5 more
doaj   +1 more source

Linguistic Validation of the Canine Brief Pain Inventory (CBPI) for Global Use

Frontiers in Veterinary Science, 2021
A valid and reliable quantitative measure of chronic pain is essential for developing and evaluating interventions that aim to treat pain. In dogs, the Canine Brief Pain Inventory (CBPI) was originally adapted from a human measure, the Brief Pain ...
Jane R. Wells, Alyson L. Young, Alexandra Crane, Hilde Moyaert, Gina Michels, Andrea Wright   +5 more
doaj   +1 more source

Towards a New Ethos of Science or a Reform of the Institution of Science? Merton Revisited and the Prospects of Institutionalizing the Research Values of Openness and Mutual Responsiveness

Novation
In this article, I will explore how the underlying research values of ‘openness’ and ‘mutual responsiveness’, which are central to open science practices, can be integrated into a new ethos of science.
René von Schomberg
doaj   +1 more source

The Humanistic Burden of Small Cell Lung Cancer (SCLC): A Systematic Review of Health-Related Quality of Life (HRQoL) Literature

Frontiers in Pharmacology, 2017
Background: Little is known about the humanistic burden of small cell lung cancer (SCLC), specifically the impact on health-related quality of life (HRQoL).
Bryan M. Bennett, Jane R. Wells, Charlotte Panter, Yong Yuan, John R. Penrod   +4 more
doaj   +1 more source

Responsive Research and Scientific Autonomy

Novation
Von Schomberg’s call to place mutual responsiveness – which I understand as the ability of researchers and the research system as a whole to foster meaningful exchanges and learn from novel experiences, no matter where those originate – at the core of ...
Sabina Leonelli
doaj   +1 more source

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

Solid Pseudopapillary Neoplasm of the Pancreas in Children and Adolescents: Expert Recommendations

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Solid pseudopapillary neoplasm of the pancreas (SPN) is a rare low‐grade malignant exocrine pancreatic tumor, mostly discovered during the second decade of life in females, with a very good prognosis, provided microscopically complete surgical excision is achieved.
Sabine Irtan, Michael Abele, Calogero Virgone, Michaela Kuhlen, Ricardo Lopez‐Almarez, Tal Ben‐Ami, Ewa Bien, Maja Cesen, Malgorzata A. Krawczyk, Andrea Ferrari, Gianni Bisogno, Yves Reguerre, Dominik T. Schneider, Louise Galmiche, Jorg Fuchs, Sarah Braungart, Bilgehan Yalcin, Ines B. Brecht, Daniel Orbach   +18 more
wiley   +1 more source

Estimating the time required to reach HPV vaccination targets across Europe

Expert Review of Vaccines
Background Cervical cancer (CC) is one of the most common causes of cancer-related deaths in women. The World Health Organization (WHO) has called for the CC elimination as a public health priority and has urged countries to achieve a 90% vaccine ...
Ilias Gountas, Mohammed Aman, Deepak Alexander, Robert Hughes, Georgie Weston, Ugne Sabale   +5 more
doaj   +1 more source