123 results on '"Smit, Amelia K."'
Search Results
2. A 10-year update to the principles for clinical trial data sharing by pharmaceutical companies: perspectives based on a decade of literature and policies
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Modi, Natansh D., Kichenadasse, Ganessan, Hoffmann, Tammy C., Haseloff, Mark, Logan, Jessica M., Veroniki, Areti A., Venchiarutti, Rebecca L., Smit, Amelia K., Tuffaha, Haitham, Jayasekara, Harindra, Manning-Bennet, Arkady, Morton, Erin, McKinnon, Ross A., Rowland, Andrew, Sorich, Michael J., and Hopkins, Ashley M.
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- 2023
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3. Long-term cost-effectiveness of a melanoma prevention program using genomic risk information compared with standard prevention advice in Australia
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Newson, Ainsley J., Morton, Rachael L., Kimlin, Michael, Keogh, Louise, Law, Matthew, Kirk, Judy, Dobbinson, Suzanne J., Kanetsky, Peter, Mann, Graham, Dawkins, Hugh, Savard, Jacqueline, Dunlop, Kate, Trevena, Lyndal, Jenkins, Mark, Allen, Martin, Butow, Phyllis, Wordsworth, Sarah, Lo, Serigne, Low, Cynthia, Smit, Amelia K., Espinoza, David, Cust, Anne E., Law, Chi Kin, Fernandez-Penas, Pablo, Nieweg, Omgo E., and Menzies, Alexander M.
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- 2023
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4. Patient demographic characteristics and risk factors associated with sun protection behaviours in specialist melanoma clinics
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Smith, Juliet, primary, Espinoza, David, additional, Smit, Amelia K., additional, Gallo, Bruna, additional, Smith, Andrea L., additional, Lo, Serigne N., additional, Guitera, Pascale, additional, Martin, Linda K., additional, and Cust, Anne E., additional
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- 2024
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5. Targeted Screening for Cancer: Learnings and Applicability to Melanoma: A Scoping Review.
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Zheng, Lejie, Smit, Amelia K., Cust, Anne E., and Janda, Monika
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MEDICAL screening , *EARLY detection of cancer , *CANCER prevention , *OVARIAN cancer , *BREAST cancer - Abstract
This scoping review aims to systematically gather evidence from personalized cancer-screening studies across various cancers, summarize key components and outcomes, and provide implications for a future personalized melanoma-screening strategy. Peer-reviewed articles and clinical trial databases were searched for, with restrictions on language and publication date. Sixteen distinct studies were identified and included in this review. The studies' results were synthesized according to key components, including risk assessment, risk thresholds, screening pathways, and primary outcomes of interest. Studies most frequently reported about breast cancers (n = 7), followed by colorectal (n = 5), prostate (n = 2), lung (n = 1), and ovarian cancers (n = 1). The identified screening programs were evaluated predominately in Europe (n = 6) and North America (n = 4). The studies employed multiple different risk assessment tools, screening schedules, and outcome measurements, with few consistent approaches identified across the studies. The benefit–harm assessment of each proposed personalized screening program indicated that the majority were feasible and effective. The establishment of a personalized screening program is complex, but results of the reviewed studies indicate that it is feasible, can improve participation rates, and screening outcomes. While the review primarily examines screening programs for cancers other than melanoma, the insights can be used to inform the development of a personalized melanoma screening strategy. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Impact of personal genomic risk information on melanoma prevention behaviors and psychological outcomes: a randomized controlled trial
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Smit, Amelia K., Allen, Martin, Beswick, Brooke, Butow, Phyllis, Dawkins, Hugh, Dobbinson, Suzanne J., Dunlop, Kate L., Espinoza, David, Fenton, Georgina, Kanetsky, Peter A., Keogh, Louise, Kimlin, Michael G., Kirk, Judy, Law, Matthew H., Lo, Serigne, Low, Cynthia, Mann, Graham J., Reyes-Marcelino, Gillian, Morton, Rachael L., Newson, Ainsley J., Savard, Jacqueline, Trevena, Lyndal, Wordsworth, Sarah, and Cust, Anne E.
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- 2021
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7. Precision Public Health Initiatives in Cancer: Proceedings from the Transdisciplinary Conference for Future Leaders in Precision Public Health
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Allen, Caitlin G., Turbitt, Erin, Smit, Amelia K., Passero, Lauren E., Olstad, Dana Lee, Hatch, Ashley, Landry, Latrice, and Roberts, Megan C.
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- 2022
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8. Family communication about genomic sequencing: A qualitative study with cancer patients and relatives
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Smit, Amelia K, Bartley, Nicci, Best, Megan C, Napier, Christine E, Butow, Phyllis, Newson, Ainsley J, Tucker, Kathy, Ballinger, Mandy L, Thomas, David M, Jacobs, Chris, Meiser, Bettina, Goldstein, David, Savard, Jacqueline, and Juraskova, Ilona
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- 2021
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9. School-based interventions to improve sun-safe knowledge, attitudes and behaviors in childhood and adolescence: A systematic review
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Reyes-Marcelino, Gillian, Wang, Rhona, Gultekin, Sinem, Humphreys, Lauren, Smit, Amelia K., Sharman, Ashleigh R., St Laurent, Andrea G., Evaquarta, Rosa, Dobbinson, Suzanne J., and Cust, Anne E.
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- 2021
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10. A review of skin cancer primary prevention activities in primary care settings.
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Singh, Nehal, Dunlop, Kate L. A., Woolley, Nikki, Vashishtha, Tracey Wills, Damian, Diona L., Vuong, Kylie, Cust, Anne E., and Smit, Amelia K.
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SKIN cancer ,CANCER prevention ,ULTRAVIOLET radiation ,PRIMARY care ,SKIN disease prevention - Abstract
Objectives: Skin cancer is highly preventable through primary prevention activities such as avoiding ultraviolet radiation exposure during peak times and regular use of sun protection. General practitioners (GPs) and primary care nurses have key responsibilities in promoting sustained primary prevention behaviour. We aimed to review the evidence on skin cancer primary prevention activities in primary care settings, including evidence on feasibility, effectiveness, barriers and enablers. Study type: Rapid review and narrative synthesis. Methods: We searched published literature from January 2011 to October 2022 in Embase, Medline, PsychInfo, Scopus, Cochrane Central and CINAHL. The search was limited to skin cancer primary prevention activities within primary care settings, for studies or programs conducted in Australia or countries with comparable health systems. Analysis of barriers and enablers was informed by an implementation science framework. Results: A total of 31 peer-reviewed journal articles were included in the review. We identified four main primary prevention activities: education and training programs for GPs; behavioural counselling on prevention; the use of novel risk assessment tools and provision of risk-tailored prevention strategies; and new technologies to support early detection that have accompanying primary prevention advice. Enablers to delivering skin cancer primary prevention in primary care included pairing preventive activities with early detection activities, and access to patient resources and programs that fit with existing workflows and systems. Barriers included unclear requirements for skin cancer prevention counselling, competing demandswithin the consultation and limited access to primary care services, especially in regional and remote areas. Conclusions: These findings highlight potential opportunities for improving skin cancer prevention activities in primary care. Ensuring ease of program delivery, integration with early detection and availability of resources such as risk assessment tools are enablers to encourage and increase uptake of primary prevention behaviours in primary care, for both practitioners and patients. [ABSTRACT FROM AUTHOR]
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- 2024
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11. Acceptability and appropriateness of a risk-tailored organised melanoma screening program: Qualitative interviews with key informants
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Dunlop, Kate L. A., primary, Keogh, Louise A., additional, Smith, Andrea L., additional, Aranda, Sanchia, additional, Aitken, Joanne, additional, Watts, Caroline G., additional, Smit, Amelia K., additional, Janda, Monika, additional, Mann, Graham J., additional, Cust, Anne E., additional, and Rankin, Nicole M., additional
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- 2023
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12. Unpacking factors contributing to melanoma overdiagnosis: does polygenic risk play a role?
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Smit, Amelia K, primary and Cust, Anne E, additional
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- 2023
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13. Advancing precision public health using human genomics: examples from the field and future research opportunities
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Roberts, Megan C., Fohner, Alison E., Landry, Latrice, Olstad, Dana Lee, Smit, Amelia K., Turbitt, Erin, and Allen, Caitlin G.
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- 2021
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14. Can patient-led surveillance detect subsequent new primary or recurrent melanomas and reduce the need for routinely scheduled follow-up? A protocol for the MEL-SELF randomised controlled trial
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Ackermann, Deonna M., Smit, Amelia K., Janda, Monika, van Kemenade, Cathelijne H., Dieng, Mbathio, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Irwig, Les, Hersch, Jolyn K., Guitera, Pascale, Soyer, H. Peter, Mar, Victoria, Saw, Robyn P. M., Low, Donald, Low, Cynthia, Drabarek, Dorothy, Espinoza, David, Emery, Jon, Murchie, Peter, Thompson, John F., Scolyer, Richard A., Azzi, Anthony, Lilleyman, Alister, and Bell, Katy J. L.
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- 2021
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15. Risk attitudes and sun protection behaviour: Can behaviour be altered by using a melanoma genomic risk intervention?
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Morton, Rachael L., Asher, Rebecca, Peyton, Edward, Tran, Anh, Smit, Amelia K., Butow, Phyllis N., Kimlin, Michael G., Dobbinson, Suzanne J., Wordsworth, Sarah, Keogh, Louise, and Cust, Anne E.
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- 2019
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16. Acceptability of risk-tailored cancer screening among Australian GPs: a qualitative study.
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LA Dunlop, Kate, Smit, Amelia K, Keogh, Louise A, Newson, Ainsley J, Rankin, Nicole M, and Cust, Anne E
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EARLY detection of cancer ,MEDICAL screening ,QUALITATIVE research ,PROFESSIONAL education ,SEMI-structured interviews - Abstract
Background: Cancer screening that is tailored to individual risk has the potential to improve health outcomes and reduce screening-related harms, if implemented well. However, successful implementation depends on acceptability, particularly as this approach will require GPs to change their practice. Aim: To explore Australian GPs' views about the acceptability of risk-tailored screening across cancer types and to identify barriers to and facilitators of implementation. Design and setting: A qualitative study using semi-structured interviews with Australian GPs. Method: Interviews were carried out with GPs and audio-recorded and transcribed. Data were first analysed inductively then deductively using an implementation framework. Results: Participants (n = 20) found risk-tailored screening to be acceptable in principle, recognising potential benefits in offering enhanced screening to those at highest risk. However, they had significant concerns that changes in screening advice could potentially cause confusion. They also reported that a reduced screening frequency or exclusion from a screening programme for those deemed low risk may not initially be acceptable, especially for common cancers with minimally invasive screening. Other reservations about implementing risk-tailored screening in general practice included a lack of high-quality evidence of benefit, fear of missing the signs or symptoms of a patient's cancer, and inadequate time with patients. While no single preferred approach to professional education was identified, education around communicating screening results and risk stratification was considered important. Conclusion: GPs may not currently be convinced of the net benefits of risk-tailored screening. Development of accessible evidence-based guidelines, professional education, risk calculators, and targeted public messages will increase its feasibility in general practice. [ABSTRACT FROM AUTHOR]
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- 2024
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17. Long-term cost-effectiveness of a melanoma prevention program using genomic risk information compared with standard prevention advice in Australia
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Law, Chi Kin, primary, Cust, Anne E., additional, Smit, Amelia K., additional, Trevena, Lyndal, additional, Fernandez-Penas, Pablo, additional, Nieweg, Omgo E., additional, Menzies, Alexander M., additional, Wordsworth, Sarah, additional, and Morton, Rachael L., additional
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- 2023
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18. Acceptability of risk-tailored cancer screening among Australian GPs: a qualitative study
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LA Dunlop, Kate, primary, Smit, Amelia K, additional, Keogh, Louise A, additional, Newson, Ainsley J, additional, Rankin, Nicole M, additional, and Cust, Anne E, additional
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- 2023
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19. Implementation considerations for offering personal genomic risk information to the public: a qualitative study
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Smit, Amelia K., Reyes-Marcelino, Gillian, Keogh, Louise, Dunlop, Kate, Newson, Ainsley J., and Cust, Anne E.
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- 2020
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20. MC1R variants and associations with pigmentation characteristics and genetic ancestry in a Hispanic, predominately Puerto Rican, population
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Smit, Amelia K., Collazo-Roman, Marielys, Vadaparampil, Susan T., Valavanis, Stella, Del Rio, Jocelyn, Soto, Brenda, Flores, Idhaliz, Dutil, Julie, and Kanetsky, Peter A.
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- 2020
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21. Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma
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Smit, Amelia K, Newson, Ainsley J, Best, Megan, Badcock, Caro-Anne, Butow, Phyllis N, Kirk, Judy, Dunlop, Kate, Fenton, Georgina, and Cust, Anne E
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- 2018
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22. Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population
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Fenton, Georgina L., Smit, Amelia K., Freeman, Lucinda, Badcock, Caro, Dunlop, Kate, Butow, Phyllis N., Kirk, Judy, and Cust, Anne E.
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- 2018
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23. Supplementary materials (clean version) from A Pilot Randomized Controlled Trial of the Feasibility, Acceptability, and Impact of Giving Information on Personalized Genomic Risk of Melanoma to the Public
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Smit, Amelia K., primary, Espinoza, David, primary, Newson, Ainsley J., primary, Morton, Rachael L., primary, Fenton, Georgina, primary, Freeman, Lucinda, primary, Dunlop, Kate, primary, Butow, Phyllis N., primary, Law, Matthew H., primary, Kimlin, Michael G., primary, Keogh, Louise A., primary, Dobbinson, Suzanne J., primary, Kirk, Judy, primary, Kanetsky, Peter A., primary, Mann, Graham J., primary, and Cust, Anne E., primary
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- 2023
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24. Personalised risk booklet - an example from A Pilot Randomized Controlled Trial of the Feasibility, Acceptability, and Impact of Giving Information on Personalized Genomic Risk of Melanoma to the Public
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Smit, Amelia K., primary, Espinoza, David, primary, Newson, Ainsley J., primary, Morton, Rachael L., primary, Fenton, Georgina, primary, Freeman, Lucinda, primary, Dunlop, Kate, primary, Butow, Phyllis N., primary, Law, Matthew H., primary, Kimlin, Michael G., primary, Keogh, Louise A., primary, Dobbinson, Suzanne J., primary, Kirk, Judy, primary, Kanetsky, Peter A., primary, Mann, Graham J., primary, and Cust, Anne E., primary
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- 2023
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25. Views of the Australian public on the delivery of risk-stratified cancer screening in the population: a qualitative study.
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Dunlop, Kate L. A., Rankin, Nicole M., Smit, Amelia K., Newson, Ainsley J., Keogh, Louise A., and Cust, Anne E.
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CANCER treatment ,PUBLIC health ,DISEASE risk factors ,WELL-being ,QUALITY of life - Abstract
Objective and importance of study: Risk-stratified approaches to cancer screening aim to provide tailored risk advice to individuals, rather than the mostly one-size-fits-all approach designed for the average person that is currently used in Australia. Stratified cancer screening has the potential to increase the benefits and reduce the harms of screening. Initial risk assessment is a crucial first step for screening programs that use risk stratification. We report findings from a qualitative study exploring the views of the Australian public on how to best deliver risk-stratified cancer screening in the population to help inform future implementation. Study type: Qualitative interview study. Methods: We conducted semistructured interviews with participants from a previous study, half of whom had received personal genomic risk information and half of whom had not. We asked how and where they would like to see risk-stratified screening delivered and how they felt about different health professionals assessing their cancer risk. Data were analysed thematically. Results: Forty interviews were conducted. The age range of participants was 21-68 years; 58% were female. Themes included: 1) Convenience is a priority; 2) General practice is a good fit for some; 3) Web-based technology is part of the process; and 4) "I would want to know why [I was being stratified]". Similar views were expressed by both groups. Our findings suggest that although health professionals were identified as having an important role, there were mixed preferences for delivery by general practitioners, medical specialists or nurses. Participants were less concerned about who undertook the risk assessment than whether the health professional had the appropriate skill set and availability. Clear communication and evidence of the need for change in screening eligibility and frequency were key factors in the successful delivery of risk-stratified screening. Conclusion: We identified that convenience and good communication, including clear explanations to the public with convincing evidence for change, will enable the successful delivery of risk-stratified cancer screening in the population, including organised and opportunistic screening approaches. Health professional education and upskilling across disciplines will be key facilitators. Engagement and further consultation with primary care and other key stakeholders will be central. [ABSTRACT FROM AUTHOR]
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- 2023
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26. Exploring the Potential Emotional and Behavioural Impact of Providing Personalised Genomic Risk Information to the Public : A Focus Group Study
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Smit, Amelia K., Keogh, Louise A., Newson, Ainsley J., Hersch, Jolyn, Butow, Phyllis, and Cust, Anne E.
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- 2015
27. Validation of self-reported sun exposure against electronic ultraviolet radiation dosimeters
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Zhang, Ran, primary, Smit, Amelia K, additional, Espinoza, David, additional, Allen, Martin, additional, Reyes-Marcelino, Gillian, additional, Kimlin, Michael G, additional, Lo, Serigne N, additional, Sharman, Ashleigh R, additional, Law, Matthew H, additional, Kanetsky, Peter A, additional, Mann, Graham J, additional, and Cust, Anne E, additional
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- 2022
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28. Barriers and Facilitators for Population Genetic Screening in Healthy Populations: A Systematic Review
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Shen, Emily C., primary, Srinivasan, Swetha, additional, Passero, Lauren E., additional, Allen, Caitlin G., additional, Dixon, Madison, additional, Foss, Kimberly, additional, Halliburton, Brianna, additional, Milko, Laura V., additional, Smit, Amelia K., additional, Carlson, Rebecca, additional, and Roberts, Megan C., additional
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- 2022
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29. Using a Participatory Approach to Develop Research Priorities for Future Leaders in Cancer-Related Precision Public Health
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Roberts, Megan C., primary, Mader, June Mullaney, additional, Turbitt, Erin, additional, Smit, Amelia K., additional, Landry, Latrice, additional, Olstad, Dana Lee, additional, Passero, Lauren E., additional, and Allen, Caitlin G., additional
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- 2022
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30. Cost-effectiveness of targeted genomic risk provision to prevent skin cancer: Results of a randomized trial.
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Law, Chi Kin, primary, Smit, Amelia K, additional, Cust, Anne E., additional, Trevena, Lyndal, additional, Penas, Pablo Fernandez, additional, Nieweg, Omgo E., additional, Menzies, Alexander M., additional, Wordsworth, Sarah, additional, and Morton, Rachael L., additional
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- 2022
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31. Validation of self-reported sun exposure against electronic ultraviolet radiation dosimeters.
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Zhang, Ran, Smit, Amelia K, Espinoza, David, Allen, Martin, Reyes-Marcelino, Gillian, Kimlin, Michael G, Lo, Serigne N, Sharman, Ashleigh R, Law, Matthew H, Kanetsky, Peter A, Mann, Graham J, and Cust, Anne E
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SUNSHINE , *DOSIMETERS , *BLAND-Altman plot , *ULTRAVIOLET radiation , *ULTRAVIOLET radiation measurement , *SOLAR ultraviolet radiation - Abstract
From the dosimeter data we derived: (i) time spent outdoors exposed to UV, defined as any 8-s measurements with UV values of >0; and (ii) total standard erythemal doses (SEDs) as a measure of UV dose. Table 1 Spearman rank correlations between weekend and weekday ultraviolet radiation (UV) exposure measured as standard erythemal doses (SEDs) using electronic UV dosimeters HT
. Validation, exposure measurement, ultraviolet radiation, dosimetry, questionnaire, skin cancer Keywords: Validation; exposure measurement; ultraviolet radiation; dosimetry; questionnaire; skin cancer EN Validation exposure measurement ultraviolet radiation dosimetry questionnaire skin cancer 324 328 5 02/16/23 20230201 NES 230201 Ultraviolet radiation (UV) exposure is the main risk factor for skin cancer[1] and skin cancer prevention research and health promotion programme evaluation relies on the accurate measurement of sun exposure using questionnaires. [Extracted from the article] - Published
- 2023
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32. Effect of an interactive educational activity using handheld ultraviolet radiation dosimeters on sun protection knowledge among Australian primary school students
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Lee Solano, Marco, Robinson, Samuel, Allen, Martin W., Reyes-Marcelino, Gillian, Espinoza, David, Beswick, Brooke, Tse, Dorothy H.K., Ding, Liyang, Humphreys, Lauren, Van Kemenade, Cathelijne, Dobbinson, Suzanne, Smit, Amelia K., and Cust, Anne E.
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- 2022
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33. Independent evaluation of melanoma polygenic risk scores in UK and Australian prospective cohorts*
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Steinberg, Julia, primary, Iles, Mark M., additional, Lee, Jin Yee, additional, Wang, Xiaochuan, additional, Law, Matthew H., additional, Smit, Amelia K., additional, Nguyen‐Dumont, Tu, additional, Giles, Graham G., additional, Southey, Melissa C., additional, Milne, Roger L., additional, Mann, Graham J., additional, Bishop, D. Timothy, additional, MacInnis, Robert J., additional, and Cust, Anne E., additional
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- 2022
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34. Assessing the Potential for Patient-led Surveillance After Treatment of Localized Melanoma (MEL-SELF)
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Ackermann, Deonna M., primary, Dieng, Mbathio, additional, Medcalf, Ellie, additional, Jenkins, Marisa C., additional, van Kemenade, Cathelijne H., additional, Janda, Monika, additional, Turner, Robin M., additional, Cust, Anne E., additional, Morton, Rachael L., additional, Irwig, Les, additional, Guitera, Pascale, additional, Soyer, H. Peter, additional, Mar, Victoria, additional, Hersch, Jolyn K., additional, Low, Donald, additional, Low, Cynthia, additional, Saw, Robyn P. M., additional, Scolyer, Richard A., additional, Drabarek, Dorothy, additional, Espinoza, David, additional, Azzi, Anthony, additional, Lilleyman, Alister M., additional, Smit, Amelia K., additional, Murchie, Peter, additional, Thompson, John F., additional, and Bell, Katy J. L., additional
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- 2022
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35. Effect of an interactive educational activity using handheld ultraviolet radiation dosimeters on sun protection knowledge among Australian primary school students
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Solano, Marco Lee, primary, Robinson, Samuel, additional, Allen, Martin W, additional, Reyes-Marcelino, Gillian, additional, Espinoza, David, additional, Beswick, Brooke, additional, Tse, Dorothy Hoi Ki, additional, Ding, Liyang, additional, Humphreys, Lauren, additional, Van Kemenade, Cathelijne, additional, Dobbinson, Suzanne, additional, Smit, Amelia K, additional, and Cust, Anne E, additional
- Published
- 2021
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36. Communicating Personal Melanoma Polygenic Risk Information: Participants' Experiences of Genetic Counseling in a Community-Based Study.
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Smit, Amelia K., Espinoza, David, Fenton, Georgina L., Kirk, Judy, Innes, Jessica S., McGovern, Michael, Limb, Sharne, Turbitt, Erin, and Cust, Anne E.
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MONOGENIC & polygenic inheritance (Genetics) , *GENETIC counseling , *HEALTH literacy , *MELANOMA , *TELEPHONE calls - Abstract
Personalized polygenic risk information may be used to guide risk-based melanoma prevention and early detection at a population scale, but research on communicating this information is limited. This mixed-methods study aimed to assess the acceptability of a genetic counselor (GC) phone call in communicating polygenic risk information in the Melanoma Genomics Managing Your Risk randomized controlled trial. Participants (n = 509) received personalized melanoma polygenic risk information, an educational booklet on melanoma prevention, and a GC phone call, which was audio-recorded. Participants completed the Genetic Counseling Satisfaction Survey 1-month after receiving their risk information (n = 346). A subgroup took part in a qualitative interview post-study completion (n = 20). Survey data were analyzed descriptively using SPSS, and thematic analysis of the qualitative data was conducted using NVivo 12.0 software. The survey showed a high level of acceptability for the GC phone call (mean satisfaction score overall: 4.3 out of 5, standard deviation (SD): 0.6) with differences according to gender (mean score for women: 4.4, SD: 0.6 vs. men: 4.2, SD: 0.7; p = 0.005), health literacy (lower literacy: 4.1, SD: 0.8; average: 4.3, SD: 0.6; higher: 4.4, SD: 0.6: p = 0.02) and polygenic risk group (low risk: 4.5, SD: 0.5, SD: average: 4.3, SD: 0.7, high: 4.3, SD: 0.7; p = 0.03). During the GC phone calls, the discussion predominately related to the impact of past sun exposure on personal melanoma risk. Together our findings point to the importance of further exploring educational and support needs and preferences for communicating personalized melanoma risk among population subgroups, including diverse literacy levels. [ABSTRACT FROM AUTHOR]
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- 2022
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37. Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis.
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Mercado, Gabriela, Newson, Ainsley J., Espinoza, David, Cust, Anne E., and Smit, Amelia K.
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RISK assessment ,MOTIVATION (Psychology) ,PARTICIPATION ,MELANOMA ,RANDOMIZED controlled trials - Abstract
The evolution of polygenic scores for use in for disease prevention and control compels the development of guidelines to optimize their effectiveness and promote equitable use. Understanding the motivations and barriers to participation in genomics research can assist in drafting these standards. We investigated these in a community-based randomized controlled trial that examined the health behavioral impact of receiving personalized melanoma genomic risk information. We examined participant responses in a baseline questionnaire and conducted interviews post-trial participation. Motivations differed in two ways: (1) by gender, with those identifying as women placing greater importance on learning about their personal risk or familial risk, and how to reduce risk; and (2) by age in relation to learning about personal risk, and fear of developing melanoma. A barrier to participation was distrust in the handling of genomic data. Our findings provide new insights into the motivations for participating in genomics research and highlight the need to better target population subgroups including younger men, which will aid in tailoring recruitment for future genomic studies. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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38. Knowledge, views and expectations for cancer polygenic risk testing in clinical practice: A cross‐sectional survey of health professionals
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Smit, Amelia K., primary, Sharman, Ashleigh R., additional, Espinoza, David, additional, Wallingford, Courtney, additional, Young, Mary‐Anne, additional, Dunlop, Kate, additional, Tiller, Jane, additional, Newson, Ainsley J., additional, Meiser, Bettina, additional, Cust, Anne E., additional, and Yanes, Tatiane, additional
- Published
- 2021
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39. Additional file 4 of Can patient-led surveillance detect subsequent new primary or recurrent melanomas and reduce the need for routinely scheduled follow-up? A protocol for the MEL-SELF randomised controlled trial
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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, Mar, Victoria, Saw, Robyn P. M., Low, Donald, Low, Cynthia, Drabarek, Dorothy, Espinoza, David, Emery, Jon, Murchie, Peter, Thompson, John F., Scolyer, Richard A., Azzi, Anthony, Lilleyman, Alister, and Bell, Katy J. L.
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Data_FILES - Abstract
Additional file 4.
- Published
- 2021
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40. Additional file 1 of Can patient-led surveillance detect subsequent new primary or recurrent melanomas and reduce the need for routinely scheduled follow-up? A protocol for the MEL-SELF randomised controlled trial
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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, Mar, Victoria, Saw, Robyn P. M., Low, Donald, Low, Cynthia, Drabarek, Dorothy, Espinoza, David, Emery, Jon, Murchie, Peter, Thompson, John F., Scolyer, Richard A., Azzi, Anthony, Lilleyman, Alister, and Bell, Katy J. L.
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Data_FILES - Abstract
Additional file 1.
- Published
- 2021
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41. Additional file 3 of Can patient-led surveillance detect subsequent new primary or recurrent melanomas and reduce the need for routinely scheduled follow-up? A protocol for the MEL-SELF randomised controlled trial
- Author
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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, Mar, Victoria, Saw, Robyn P. M., Low, Donald, Low, Cynthia, Drabarek, Dorothy, Espinoza, David, Emery, Jon, Murchie, Peter, Thompson, John F., Scolyer, Richard A., Azzi, Anthony, Lilleyman, Alister, and Bell, Katy J. L.
- Subjects
Data_FILES - Abstract
Additional file 3.
- Published
- 2021
- Full Text
- View/download PDF
42. Additional file 2 of Can patient-led surveillance detect subsequent new primary or recurrent melanomas and reduce the need for routinely scheduled follow-up? A protocol for the MEL-SELF randomised controlled trial
- Author
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Deonna M. Ackermann, Smit, Amelia K., Janda, Monika, Van Kemenade, Cathelijne H., Mbathio Dieng, Morton, Rachael L., Turner, Robin M., Cust, Anne E., Les Irwig, Jolyn K. Hersch, Guitera, Pascale, H. Peter Soyer, Mar, Victoria, Saw, Robyn P. M., Low, Donald, Low, Cynthia, Drabarek, Dorothy, Espinoza, David, Emery, Jon, Murchie, Peter, Thompson, John F., Scolyer, Richard A., Azzi, Anthony, Lilleyman, Alister, and Bell, Katy J. L.
- Subjects
Data_FILES - Abstract
Additional file 2.
- Published
- 2021
- Full Text
- View/download PDF
43. Acceptability of risk‐stratified population screening across cancer types: Qualitative interviews with the Australian public
- Author
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Dunlop, Kate, primary, Rankin, Nicole M., additional, Smit, Amelia K., additional, Salgado, Zofia, additional, Newson, Ainsley J., additional, Keogh, Louise, additional, and Cust, Anne E., additional
- Published
- 2021
- Full Text
- View/download PDF
44. Can Patient-Led Surveillance Detect Subsequent New Primary or Recurrent Melanomas and Reduce the Need for Routinely Scheduled Follow Up? A Protocol for the MEL-SELF Randomised Controlled Trial.
- Author
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Ackermann, Deonna, primary, Smit, Amelia K, additional, Janda, Monika, additional, Kemenade, Cathelijne van, additional, Dieng, Mbathio, additional, Morton, Rachael L, additional, Turner, Robin M, additional, Cust, Anne E, additional, Irwig, Les, additional, Hersch, Jolyn, additional, Guitera, Pascale, additional, Soyer, H Peter, additional, Mar, Victoria, additional, Saw, Robyn P.M., additional, Low, Donald, additional, Low, Cynthia, additional, Drabarek, Dorothy, additional, Espinoza, David, additional, Emery, Jon, additional, Murchie, Peter, additional, Thompson, John F, additional, Scolyer, Richard, additional, Azzi, Anthony, additional, Lilleyman, Alister, additional, and Bell, Katy, additional
- Published
- 2021
- Full Text
- View/download PDF
45. Additional file 1 of Implementation considerations for offering personal genomic risk information to the public: a qualitative study
- Author
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Smit, Amelia K., Reyes-Marcelino, Gillian, Keogh, Louise, Dunlop, Kate, Newson, Ainsley J., and Cust, Anne E.
- Abstract
Additional file 1. Interview guide questions specific to implementation considerations. This table contains the subset of questions from the interview guide specific to implementation considerations.
- Published
- 2020
- Full Text
- View/download PDF
46. Translating melanoma genomic risk information into prevention and early detection strategies: behavioural, psychosocial, ethical and implementation considerations
- Author
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Smit, Amelia K
- Subjects
Prevention ,Population ,Early detection ,Genomics ,Melanoma ,Risk communication - Abstract
Melanoma, the most life threatening form of skin cancer, is associated with significant morbidity and mortality. However, more than 80% of melanoma diagnoses could be prevented through reduced sun exposure and improved sun protection. Early detection through skin examination increases the likelihood of identifying melanoma at an early stage, when disease prognosis is better. But prevention and early detection behaviours are sub-optimal in Australia. Further improvements to strategies that encourage these behaviours are required. A novel approach is to personalise prevention and early detection strategies by taking into account a range of factors, including personal genomic (polygenic) risk, for individual risk assessment, and the provision of risk-specific (risk-stratified) recommendations. For melanoma, common genomic variants individually have small to moderate effect sizes for risk, and collectively have been shown to improve risk prediction models. Melanoma genomic risk variants also have a wide distribution, which would enable the stratification of risk in the wider population. There are several potential cross-cutting implications of personalising melanoma prevention and early detection strategies for the otherwise healthy population, which relate to individuals, families, ethical and implementation considerations. However, the evidence base for these implications is poor, and considerations of benefits and drawbacks are underdeveloped. This PhD thesis addresses major gaps in research by generating novel, mixed-methods (qualitative and quantitative) evidence on key implications of translating melanoma genomic risk information into personalised prevention and early detection. It includes evidence on individual impacts, communication with family, friends and health professionals, ethical and implementation considerations. These findings will inform future research and policy on personalised prevention and early detection efforts, such as risk-stratified screening.
- Published
- 2020
47. ‘There is a lot of good in knowing, but there is also a lot of downs’: public views on ethical considerations in population genomic screening
- Author
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Smit, Amelia K, primary, Reyes-Marcelino, Gillian, additional, Keogh, Louise, additional, Cust, Anne E, additional, and Newson, Ainsley J, additional
- Published
- 2020
- Full Text
- View/download PDF
48. The Melanoma Genomics Managing Your Risk Study randomised controlled trial: Statistical Analysis Plan
- Author
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Lo, Serigne N, primary, Smit, Amelia K, additional, Espinoza, David, additional, and Cust, Anne E, additional
- Published
- 2020
- Full Text
- View/download PDF
49. Patients’ Views About Skin Self-examination After Treatment for Localized Melanoma
- Author
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Dieng, Mbathio, primary, Smit, Amelia K., additional, Hersch, Jolyn, additional, Morton, Rachael L., additional, Cust, Anne E., additional, Irwig, Les, additional, Low, Donald, additional, Low, Cynthia, additional, and Bell, Katy J. L., additional
- Published
- 2019
- Full Text
- View/download PDF
50. GP attitudes to and expectations for providing personal genomic risk information to the public: a qualitative study
- Author
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Smit, Amelia K, primary, Newson, Ainsley J, additional, Keogh, Louise, additional, Best, Megan, additional, Dunlop, Kate, additional, Vuong, Kylie, additional, Kirk, Judy, additional, Butow, Phyllis, additional, Trevena, Lyndal, additional, and Cust, Anne E, additional
- Published
- 2019
- Full Text
- View/download PDF
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