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How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research.

ABSTRACT: Breast cancer research and therapies have significantly advanced in recent years. However, Invasive Lobular Carcinoma (ILC), the second most common histological type of breast cancer and the sixth most frequently diagnosed cancer of women, has not always benefited from critical analysis, missing opportunities to better understand this important subtype. Recent progress understanding the biological and behavioral differences of ILC demonstrates that it is a unique subtype of breast cancer which can respond differently to common therapies. These new insights have increased interest in researching lobular breast disease. Concurrently, the formation of motivated patient-led advocacy organizations working in partnership with basic, translational and clinical researchers creates new opportunities, including connecting a dispersed patient population to research, encouraging new research funding and connecting patient advocates to researchers to advance common goals. This commentary will explore the unprecedented opportunity to drive multidisciplinary, multicenter and international collaborative research into lobular breast cancer that builds on recent research progress. Collaborative research partnerships that include advocates can result in a better understanding of ILC, identify targeted therapies and refine standard of care therapies that are currently equally applied to all breast cancers, resulting in improvements in the diagnosis, treatment and follow-up care for patients with ILC.

SUBMITTER: Pate L

PROVIDER: S-EPMC8268486 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundRetinoblastoma is a childhood cancer of the eye that can have lifelong effects on patients and families. The purpose of this study was for people affected by retinoblastoma, clinicians and researchers to jointly determine the top 10 retinoblastoma research priorities in Canada.MethodsAn adaptation of the James Lind Alliance Priority Setting Partnership (PSP) methodology was employed. People were invited to participate in any stage of the priority-setting process if they were a resident of Canada, and were a patient with retinoblastoma (or a family member or friend of someone diagnosed with retinoblastoma) or a clinician or researcher interested in retinoblastoma. Patients were full partners in study design and implementation, and result dissemination, through involvement in a national working group (1 patient and 9 nonpatients) and steering committee (4 patients and 11 nonpatients). In phase 1 of the study, participants responded to an online survey that asked, "What questions about retinoblastoma would you like to see answered by research?" In phase 2, the steering committee reviewed and refined the list of survey responses and decided on a list of 30 questions to be ranked by means of the nominal group technique in phase 3, a priority-setting workshop.ResultsIn total, 175 retinoblastoma research questions were suggested by 59 survey participants (38 patients and 21 nonpatients). The categories with the greatest number of questions were genetics and molecular (45 [25.7%]), second cancer (29 [16.6%]) and psychosocial (27 [15.4%]). The top 10 questions as ranked by the workshop participants (10 patients and 10 nonpatients) fell into 7 categories: second cancer (2 questions), follow-up (2), psychosocial (2), treatment (1), diagnosis (1), global health (1) and miscellaneous (1). The early diagnosis of retinoblastoma was identified as the top retinoblastoma research priority in Canada.InterpretationThe list of priorities will serve as a resource for advocacy groups, research teams and funding agencies that focus on retinoblastoma. The inclusion of researchers as participants was an adaptation of the James Lind Alliance PSP methodology and enriched the research prioritization process.

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How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research.

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