Results 21 to 30 of about 1,229,920 (265)

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

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

Predictive utility of key family planning indicators on dynamic contraceptive outcomes: Results from longitudinal surveys in Burkina Faso, Kenya, Uganda, and Côte d'Ivoire [PDF]

Demographic Research
BACKGROUND: Many health and demographic surveys routinely collect information on women’s exposure to family planning (FP) messages, counseling on contraceptive side effects, discussions about FP with providers, contraceptive decision-making autonomy, and
Amy Tsui, Dana Sarnak, Phil Anglewicz, Fredrick Makumbi, Georges Guiella, Peter Gichangi, Rosine Mosso, Saifuddin Ahmed   +7 more
doaj   +1 more source

Are Fertility Preservation Procedures Before Gonadotoxic Therapy and Hematopoietic Stem Cell Transplantation Feasible and Safe in Very Young Children? A Retrospective Cohort Study

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Fertility preservation (FP) is increasingly integrated into the care of pediatric patients exposed to gonadotoxic therapy or conditioning for hematopoietic stem cell transplantation (HSCT), yet perioperative data in infants and toddlers remain scarce.
Kerstin Saalabian, Yannick Braun, Till‐Martin Theilen, Anke Barnbrock, Theresa Rohm, Fabienne Hammant, Nicole Sänger, Aynura Abbasova‐Semiz, Jan‐Henning Klusmann, Thomas Klingebiel, Udo Rolle, Peter Bader, Henning C. Fiegel, Andrea Jarisch   +13 more
wiley   +1 more source

Co-developing resources for better public understanding of Longitudinal Population Study Data and the Law

International Journal of Population Data Science
Introduction The legal basis for using participants' data in Longitudinal Population Studies (LPS) is complex. Laws of particular relevance are (1) UK data protection legislation, including Data Protection Act 2018 and UK General Data Protection ...
Kirsteen Campbell, Sarah Chave, Rosie Hill, Mhairi Docherty, Michael Gregg, Emma Turner, Katharine Evans, Jacqui Oakley, Stela McLachlan, Alex Bailey, Cassie Smith, Rebecca Whitehorn, Lidis Garbovan, Robin Flaig, Andy Boyd   +14 more
doaj   +1 more source

Feasibility and Safety of Somato‐Cognitive Coordination Therapy for Cerebellar Ataxia Following Pediatric Brain Tumor Treatment

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Cerebellar ataxia after pediatric brain tumor treatment can cause persistent gait, balance, and speech impairment, yet no established rehabilitation strategy exists. Somato‐cognitive coordination therapy (SCCT) is a virtual reality–guided intervention designed to promote sensorimotor integration through visually constrained reaching
Masanobu Takeuchi, Takashi Matsuzawa, Jun Yamanishi, Masahiro Yoshitomi, Junji Ikeda, Shin‐Ichi Tsujimoto, Yasuteru Yamaguchi, Norio Shiba, Dhroov Pathare, Ayumi Kato, Masahiko Hara   +10 more
wiley   +1 more source

Sustained Therapeutic Efficacy of Intravenous Plasminogen Concentrate in Pediatric Patients With Type 1 Plasminogen Deficiency: An Analysis of Dosing Parameters and Clinical Outcomes

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Type 1 plasminogen deficiency (PLGD‐1) is an ultra‐rare autosomal recessive disorder caused by variants in the PLG gene and affects approximately 1.6 individuals per million. The condition is characterized by decreased plasminogen levels and impaired function, resulting in fibrin‐rich lesions on mucous membranes throughout the body.
Charles Nakar, Karen Thibaudeau, Mary Mathias, Heather McDaniel, Madlen Reschke, Klaus Tenbrock, Joseph M. Parker, Amy Shapiro   +7 more
wiley   +1 more source

A novel protocol for a "Citizen Panel" for diverse Public and Participant Involvement in the review and development of the process to access data in the UK Longitudinal Linkage Collaboration Trusted Research Environment

International Journal of Population Data Science
Background Researchers can apply to UK Longitudinal Linkage Collaboration (UK LLC) to access Longitudinal Population Study (LPS) data linked to health, non-health administrative and geo-environmental data.
Lidis Garbovan, Betty O. Idemudia, Robin Flaig, Kirsteen Campbell, Katharine Evans, Andy Boyd, Sarah Cunningham-Burley, Emma L. Turner   +7 more
doaj   +1 more source

Leukemia and Exposure to Potential Benzene Sources in Children From the Mexico City Metropolitan Area, 2010–2021: A Geospatial Analysis

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Background Leukemia is the most common childhood cancer in Mexico, and acute lymphoblastic leukemia (ALL) is the most frequent subtype. Exposure to high concentrations of benzene has been associated with ALL incidence, particularly in urban areas. This study evaluated the relationship between distance to benzene emission sources and the number
Orlando Rivera Zurita, Norma Candelaria López Santiago, Claudia Maria García Cuellar, Karla Maldonado Silva, Nancy Reynoso Noverón, Leticia Hernández Cadena   +5 more
wiley   +1 more source

Early Impact of Childhood Opportunity on Neurocognitive Outcomes in Sickle Cell Disease

Pediatric Blood &Cancer, EarlyView.
ABSTRACT Introduction Neurocognitive impairment is a well‐recognized complication of sickle cell disease (SCD) that begins early in childhood and persists across development. While cerebrovascular injury contributes substantially to risk, neurocognitive deficits are also observed in children without overt or silent cerebral infarctions, suggesting ...
Julia E. LaMotte, Hannah Koch, Olivia A. Coughlin, Jillian R. Bouck, Allie Carter, Seethal A. Jacob   +5 more
wiley   +1 more source