Results 71 to 80 of about 525,062 (261)

Co-development and Adoption of Transparency in Data Access Standards: Process, Implementation, and Impact

International Journal of Population Data Science
Objectives This initiative aimed to enhance transparency in health data access processes by co-developing and implementing clear standards. The goal was to improve public trust and understanding, streamline governance, and promote meaningful public ...
Ester Bellavia, Alan Holcroft, Yemi Macaulay, Doreen Tembo, Cassie Smith, Andy Boyd   +5 more
doaj   +1 more source

Demystifying probabilistic linkage

International Journal of Population Data Science, 2018
Many of the distinctions made between probabilistic and deterministic linkage are misleading. While these two approaches to record linkage operate in different ways and can produce different outputs, the distinctions between them are more a result of how
James C Doidge, Katie Harron
doaj   +1 more source

Immunoglobulin Depletion and Recovery Following Blinatumomab in Infants With KMT2A‐Rearranged ALL

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Adding blinatumomab to standard chemotherapy for infants with KMT2A‐rearranged acute B‐cell lymphoblastic leukemia (KMT2A‐r B‐ALL) improves outcomes. Although blinatumomab impairs immunoglobulin G (lgG) production, increasing infection susceptibility, IgG recovery remains poorly understood.
Miguel Vieira Martins, Paola de Lorenzo, Rishi S. Kotecha, Andishe Attarbaschi, Gabriele Escherich, Karsten Nysom, Jan Stary, Alina Ferster, Benoit Brethon, Franco Locatelli, Martin Schrappe, Peggy E. Scholte‐van Houtem, Maria G. Valsecchi, Rob Pieters, Inge M. van der Sluis   +14 more
wiley   +1 more source

Embedding Public Voices in Data Governance: Insights from the GUARDS Principles Consultation

International Journal of Population Data Science
Objectives This project explored public perspectives on the GUARDS Principles, an overarching governance framework for the population data research community, which builds on existing good practice guidance.
Ester Bellavia, Rachel Brophy, Sonia Patton, Doreen Tembo, Cassie Smith, Andy Boyd   +5 more
doaj   +1 more source

Bridging the Gap in Neuroblastoma Care: Consensus‐Based Statements With Recommendations for Improved Patient and Caregiver Experiences

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Neuroblastoma's complex, heterogeneous biology poses significant diagnostic and therapeutic challenges, often requiring caregivers to absorb complex information and participate in time‐sensitive decisions. However, caregivers often feel unprepared to evaluate options.
Vickie Buenger, Joseph Bauer, Jennifer Diamond, Maggie Fader, Shae Hansen, Jacqueline M. Kraveka, Johanna Schoen, Amber Shearer, Dena Sherwood   +8 more
wiley   +1 more source

Impact of Metastatic Patterns on Survival and Response to Therapy in Neuroblastoma

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background While the presence of metastases in neuroblastoma (NB) is a well‐established prognostic factor, the clinical significance of dissemination patterns and tumour burden and their impact on response and survival remains poorly understood.
Mariona Morell‐Daniel, Santiago Pérez‐Hoyos, Aroa Soriano, Ana Coma, Amalia Varo, Raquel Hladun, Gabriela Guillén, Soraya Mico, Marta Garrido, Lourdes Rubio, Alba Rubio‐San‐Simón, Ana Minguez, Ricardo López‐Almaraz, Laura Illade, Miguel F. Segura, Lucas Moreno   +15 more
wiley   +1 more source

High quality linked data for stroke obtained using non-government clinical registry and routinely collected hospital and death data

International Journal of Population Data Science, 2018
Introduction Recent advances in data linkage infrastructure in Australia mean that data can be linked based on various identifiers across datasets. In a first for Australia, we tested the feasibility of linking data between a clinical quality disease ...
Monique Kilkenny, Joosup Kim, Nadine Andrew, Vijaya Sundararajan, Amanda Thrift, Judith Katzenellenbogen, Felicity Flack, Melina Gattellari, James Boyd, Phil Anderson, Natasha Lannin, Mark Sipthorp, Ying Chen, Trisha Johnston   +13 more
doaj   +1 more source

Improving record linkage performance in the presence of missing linkage data

Journal of Biomedical Informatics, 2014
Existing record linkage methods do not handle missing linking field values in an efficient and effective manner. The objective of this study is to investigate three novel methods for improving the accuracy and efficiency of record linkage when record linkage fields have missing values.By extending the Fellegi-Sunter scoring implementations available in
Toan C. Ong, Michael V. Mannino, Lisa M. Schilling, Michael G. Kahn   +3 more
openaire   +2 more sources

Sociodemographic Factors Associated With Later Stage at Diagnosis of Pediatric Germ Cell Tumors: A Report From Children's Oncology Group Registries ACCRN07 and APEC14B1

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Germ cell tumors (GCTs) often arise in the ovaries and testes (extracranial) but can also develop in the brain (intracranial). We examined the relationship of individual, family, and community‐level socioeconomic status (SES) with stage of disease at diagnosis in a cohort of pediatric patients with GCT from Children's Oncology Group
Heydon K. Kaddas, Judy Y. Ou, Todd Alonzo, Logan G. Spector, Negar Fallahazad, Emily Owens, Anne C. Kirchhoff, Adam L. Green   +7 more
wiley   +1 more source

Mapping Childhood Cancer Care Services in Oceania: Methodological Lessons From the SIOP Global Mapping Programme

Pediatric Blood &Cancer, EarlyView.
ABSTRACT The International Paediatric Oncology Society Global Mapping Programme aims to collect data on global paediatric oncology services by continent, with Africa and Latin America completed. This study reports on the methodology and lessons learned for Oceania, a unique continent with resource disparity across countries, multiple small island ...
Trisha Soosay Raj, Christy Noble, Amy Gray, Daniel C. Moreira, Jennifer Lowe, Maite Gorostegui, Gwenda Anga, Andrew Soma, Milena Lay Dos Santos, Siobhan Cross, Erin Luttrell, Michael Sullivan, Julie Cayrol, Julia Challinor, Neil Ranasinghe, Jordana McLoone, Claire E. Wakefield   +16 more
wiley   +1 more source