- Abstract
- 10.1016/j.ymgme.2023.107964
Co-developing The Canadian MPS Registry: A longitudinal rare disease patient registry
- Jan 31, 2024
- Molecular Genetics and Metabolism
- John J Mitchell + 23 more +23
Publications from 2021 to 2026
Showing 7 of 7 papers
Co-developing The Canadian MPS Registry: A longitudinal rare disease patient registry
Workshop “ The Role of Mineral Resources in Sustainable Development in Egypt : Challenges and Solutions “Pyramisa Hotel, Dokki, September 7-8, 2022 Cairo, Egypt
The paper describes the need for conservation of mineral wealth with a view of utilizing existing resources efficiently, discovering new deposits, finding substitutes & recycling.The focus for the conservation of mineral resources must be on extraction practices of the mineral itself.The role of State is significant for optimizing mine life and implementation of royalty regime that encourages the user of low-grade minerals.The main assumptions presented in this paper are that relate to the conservation of minerals for achieving sustainable growth, the ones that will significantly shape the development of mining in the future while minimizing the impact on the environment.Sustainable growth requires balancing long-term economic, environmental and social objectives.What makes this challenging is that the solutions lie beyond the traditional areas of engineering design and industrial ecology, encompassing the ecological and social implications of technological decisions.In the minerals sector, sustainable development means that investments in mineral projects should be financially profitable, technically appropriate, environmentally sound and socially responsible.Businesses involved in extracting non-renewable resources have come under growing pressure to embed the concept of sustainability into strategic decision-making processes and operations.Economic development, environmental impact and social responsibilities together with the conservation of minerals can be done in many ways including:• Minerals should be used in a planned and sustainable manner.• Technology should be upgraded to allow the use of low-grade ore at low costs.• Using the mineral resources with great efficiency.• Avoid the over exploitations of minerals.• Recycling of metals also results in the conservation of mineral resources.
Read moreQuantum Computing and Cloud Security: Future-Proofing Healthcare Data Protection
Cloud computing has emerged as the prevailing development in healthcare systems across the global market. These systems are creating and processing vast amounts of patient data that require a certain level of security. However, due to the introduction of quantum computation, the future of cryptographic techniques on which Cloud security relies is in danger. The following paper seeks to explore the compatibility of quantum computing and cloud security and regard to the protection of health data. It also includes a comprehensive analysis of the current risks, a discussion of already existing quantum-vulnerable points, and a strategy for creating a quantum-safe strategy for safe patient data storage in healthcare. The study under consideration also employs quantum cryptography and cloud structures to identify threats and create appropriate defence mechanisms. Some models explored and analyzed include Quantum Key Distribution (QKD), Post-Quantum Cryptography (PQC) and hybrid cryptosystems. A simulated hospital database has brought about the fragility of some of these algorithms, a research work dubbed as quantum resilience, in order to explain how it is possible to integrate these two concepts without removing the aspects of the cloud that make it appealing to many people, including scalability and accessibility. This indicates that there has been a major enhancement in standing against quantum attacks, specifically showing the way towards effective, sustainable and protected healthcare information systems.
Read moreEstablishing a core outcome set for mucopolysaccharidoses (MPS) in children: study protocol for a rapid literature review, candidate outcomes survey, and Delphi surveys
BackgroundMucopolysaccharidoses (MPS) are a group of inherited metabolic diseases characterized by chronic, progressive multi-system manifestations with varying degrees of severity. Disease-modifying therapies exist to treat some types of MPS; however, they are not curative, underscoring the need to identify and evaluate co-interventions that optimize functioning, participation in preferred activities, and quality of life. A Canadian pediatric MPS registry is under development and may serve as a platform to launch randomized controlled trials to evaluate such interventions. To promote the standardized collection of patient/family-reported and clinical outcomes considered important to patients/families, health care providers (HCPs), and policymakers, the choice of outcomes to include in the registry will be informed by a core outcome set (COS). We aim to establish a patient-oriented COS for pediatric MPS using a multi-stakeholder approach.MethodsIn step 1 of the six-step process to develop the COS, we will identify relevant outcomes through a rapid literature review and candidate outcomes survey. A two-phase screening approach will be implemented to identify eligible publications, followed by extraction of outcomes and other pre-specified data elements. Simultaneously, we will conduct a candidate outcomes survey with children with MPS and their families to identify outcomes most important to them. In step 2, HCPs experienced in treating patients with MPS will be invited to review the list of outcomes generated in step 1 and identify additional clinically relevant outcomes. We will then ask patients/families, HCPs, and policymakers to rate the outcomes in a set of Delphi Surveys (step 3), and to participate in a subsequent consensus meeting to finalize the COS (step 4). Step 5 involves establishing a set of outcome measurement instruments for the COS. Finally, we will disseminate the COS to knowledge users (step 6).DiscussionThe proposed COS will inform the choice of outcomes to include in the MPS registry and, more broadly, promote the standardized collection of patient-oriented outcomes for pediatric MPS research. By involving patients/families from the earliest stage of the research, we will ensure that the COS will be relevant to those who will ultimately benefit from the research.Trial registrationPROSPERO CRD42021267531, COMET
Read moreCorrosion Fatigue Failure of a Water Injection Line in Oil Operation
A 24-in (610-mm) water injection line failed by cracking. Testing indicated that the pipe material did not contribute to failure. Deterioration of the external coating led to severe localized corrosion attack and a gradual thinning of the pipe wall. Cracks were initiated from pitting on the outer surface. Low cycle fatigue stresses were created from improper suspension and fixation. The failure was caused by corrosion fatigue.
Read more115 ASSOCIATION BETWEEN ADIPOKINES AND PROGRESSION OF HAND OSTEOARTHRITIS
Thermal cycling of Pb/Sn eutectic alloy
Severe deformation, annealed and thermal cycling are employed on Pb/Sn eutectic alloy. The cycling was carried out between room temperature and 140 o C, and the cycling number ranged from 0 to 1300 cycles. Microstructural studies revealed that grain size and volume fraction were increased by thermal cycling. The morphology of lamellar structure chanhed to spherical structure by severe deformation and annealing. No effect of thermal cycling on morphology was observed. The dimensional change after cycling was anisotropic; the length expanded, whereas the width and thickness shrank. These changes in dimensions are attributed to elastic and plastic strains, and / or creep strain. Preliminary tensile test measurements showed that »m«-value decreased by cycling. Also, total ductility decreased. These are due to the increase in both grain size and volume fraction
Read more