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Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative motor neuron disease (MND) with heterogeneity in disease onset, progression and treatment response. The Strategic ALS Australia–Systems Genomics Consortium (SALSA-SGC) was established in recognition of the need for large data sets of clinical data matched with biological samples to enable and foster ALS research and better understanding of aetiology and biological mechanisms. SALSA-SGC brought together the major Australian MND clinics to set up sustainable infrastructure that could facilitate long-term human ALS research and clinical trials nationally and internationally.
Between April 2016 and December 2024, SALSA-SGC recruited 1813 participants, including 1386 ALS/MND cases, 388 controls and 39 others (asymptomatic relatives and ALS mimics). Clinical data and biospecimens are available for 1333 and 1189 ALS cases, respectively, with longitudinal data spanning 4442 total clinic visits and 3201 samples. An open-access online data explorer showcases collected datasets.
Detailed clinical and questionnaire data allow an in-depth description of the cohort, informing clinical and health policy research. Screening for known ALS large-effect risk variants identified 125 mutation carriers (11.5% from N=1059), including 70 with C9orf72 expansions. Single Nucleotide Polymorphism (SNP)-array data (N=1088 cases; N=244 controls) have supported multiple published studies. SALSA-SGC resources are actively used by national and international researchers.
Ongoing efforts aim to expand recruitment into regional Australia and enhance sample processing for cell-based studies. The SALSA-SGC resource is accessible by researchers under agreements governed by participant consent, human ethics committee guidelines and agreed use of data and samples.
Nurse practitioner-sensitive outcomes (NPSOs) are critical indicators of the quality and effectiveness of nursing care provided to older adults. These outcomes, which include metrics such as falls, pressure ulcers, infection rates, frailty, delirium, length of stay, hospital readmissions, and quality of life (QoL), are essential for assessing the impact of nurse practitioners (NPs) and enhancing patient safety. Despite their importance, the current literature on NPSOs in services for older adults remains limited. This scoping review aims to address this gap by systematically mapping the existing research, identifying key themes, and uncovering areas needing further exploration. By doing so, the authors seek to provide a comprehensive overview that will inform future research directions and contribute to the enhancement of clinical practice in older person services (OPS). This review is important for healthcare providers, policymakers, and researchers who are committed to improving the quality of nursing care and outcomes for older people.
The aim of this scoping review is to map the existing research on NPSOs in services for older adults. This review seeks to identify key themes and gaps in the current literature to guide future research and enhance clinical practice in this area.
The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines were utilised to structure this scoping review.
From initial screening of 3593 manuscripts drawn from seven databases, 66 were deemed eligible for full screen. Five studies met the inclusion criteria and were ultimately selected for data extraction and analysis. The most common outcome measures reported were complications and comorbidities, and QoL.
This review highlights that the reporting of NPSOs in older person care is lacking and requires further attention.
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