Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020–2023)

International Journal of Neonatal Screening, Год журнала: 2024, Номер 10(2), С. 38 - 38

Опубликована: Май 23, 2024

Newborn bloodspot screening (NBS) began in the early 1960s based on work of Dr. Robert “Bob” Guthrie Buffalo, NY, USA. His development a test for phenylketonuria blood absorbed onto special filter paper and transported to remote testing laboratory it all. Expansion NBS large numbers asymptomatic congenital conditions flourishes many settings while has not yet been realized others. The need as an efficient effective public health prevention strategy that contributes lowered morbidity mortality wherever is sustained well known medical field but necessarily by political policy makers. Acknowledging value national reports published 2007, authors collaborated create worldwide update 2015. In continuing attempt review progress globally, move towards more harmonized equitable system, we have updated our 2015 report with information available at beginning 2024. Reports sub-Saharan Africa Caribbean, missing 2015, included. Tables popular previous eye comparisons. To emphasize areas needing attention used regional tables containing similar listings screened, laboratories, time which specimen collection recommended. Discussions are limited screening.

Язык: Английский

Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, Год журнала: 2024, Номер 25(5-6), С. 634 - 643

Опубликована: Март 22, 2024

Objective: There are compelling ethical and practical reasons for patient engagement in research (PEIR), however, evidence best practices remains limited. We investigated PEIR as implemented CAPTURE ALS, a longitudinal observational study, from study inception through the first 2.5 years of operations. Methods: Data were drawn three initiatives: community-led letter-writing campaign; consultation with caregiver focus groups; study-embedded 'participant partner advisory council' (PPAC). derived retrospectively documentation. used International Association Public Participation (IAP2) participation spectrum framework investigation. Results: 2401 letters community members to Canadian government affirmed objectives advocated funding. Feedback group influenced design supported study's data-sharing plan. PPAC collaboration shaped all aspects study. Contributions included: co-creation governance documents, input on protocols public-facing communication, development webinars participants feedback surveys. Effective communication fostered helped avoid tokenistic engagement. ALS encompassed IAP2 levels. Conclusions: was by meaningful initiatives over course Lessons learned begin early embed within research; build relationships foster mutual learning; be flexible, open adaptation, seek diversity. Primary challenges included funding implementation, time needed maintain relationships, attrition due disease progression. All levels contributed PEIR. 'Empowerment' demonstrated advocacy.

Язык: Английский

Water Fluoridation and Cancer Risk

Environmental science and engineering, Год журнала: 2024, Номер unknown, С. 87 - 115

Опубликована: Дек. 31, 2024

Язык: Английский