Consent is generally required for research and sharing rich individual-level data but presents additional ethical and legal challenges where participants have diminished decision-making capacity. We ...formed a multi-disciplinary team to develop best practices for consent in data-intensive dementia research. We recommend that consent processes for research and data sharing support decision-making by persons with dementia, protect them from exploitation, and promote the common good. Broad consent designed to endure beyond a loss of capacity and combined with ongoing oversight can best achieve these goals. Persons with dementia should be supported to make decisions and enabled to express their will and preferences about participation in advance of a loss of capacity. Regulatory frameworks should clarify who can act as a representative for research decisions. By promoting harmonization of consent practices across institutions, sectors, and countries, we hope to facilitate data sharing to accelerate progress in dementia research, care, and prevention.
Full text
Available for:
FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Background Painful feet are an extremely common problem amongst older women. Such problems increase the risk of falls and hamper mobility. The aetiology of painful and deformed feet is poorly ...understood. Methods Data were obtained during a pilot case-control study about past high heel usage in women, in relation to osteoarthritis of the knee. A total of 127 women aged 50-70 were interviewed (31 cases, 96 controls); case-control sets were matched for age. The following information was obtained about footwear: (1) age when first wore shoes with heels 1, 2 and 3 inches high; (2) height of heels worn for work; (3) maximum height of heels worn regularly for work, going out socially and for dancing, in 10-year age bands. Information about work-related activities and lifetime occupational history was gathered using a Life-Grid. The interview included a foot inspection. Results Foot problems, particularly foot arthritis, affected considerably more cases than controls (45 per cent versus 16 per cent, p = 0.001) and was considered a confounder. Cases were therefore excluded from subsequent analyses. Amongst controls, the prevalence of any foot problems was very high (83 per cent). All women had regularly worn one inch heels and few (8 per cent) had never worn 2 inch heels. Foot problems were significantly associated with a history of wearing relatively lower heels. Few work activities were related to foot problems; regular lifting was associated with foot pain (p = 0.03). Conclusion Most women in this age-group have been exposed to high-heeled shoes over many years, making aetiological research difficult in this area. Foot pain and deformities are widespread. The relationship between footwear, occupational activities and foot problems is a complex one that deserves considerably more research.
Full text
Available for:
BFBNIB, NMLJ, NUK, PNG, UL, UM, UPUK
PDF
