Meaningful engagement of the patient in rare cancer research: sarcoma as an exemplar
Tài liệu tham khảo
Braun, 2003, The history of breast cancer advocacy, Breast J, 9, S101, 10.1046/j.1524-4741.9.s2.13.x
Thornton, 2006, Patients and health professionals working together to improve clinical research: where are we going?, Eur J Cancer, 42, 2454, 10.1016/j.ejca.2006.05.022
Ciccarella, 2018, Transforming research: engaging patient advocates at all stages of cancer research, Ann Transl Med, 6, 167, 10.21037/atm.2018.04.46
Deverka, 2012, Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement, J Comp Eff Res, 1, 181, 10.2217/cer.12.7
Perlmutter, 2013, Cancer research advocacy: past, present, and future, Cancer Res, 73, 4611, 10.1158/0008-5472.CAN-12-4553-T
Salamone, 2018, Promoting Scientist-Advocate Collaborations in Cancer Research: Why and How, Cancer Res, 78, 5723, 10.1158/0008-5472.CAN-18-1600
Siegel, 2020, Cancer statistics, 2020, CA Cancer J Clin, 70, 7, 10.3322/caac.21590
Rare Disease Act. 2002; Available from: https://www.congress.gov/bill/107th-congress/house-bill/4013. Access date: January 30, 2021.
Baker, 2019, The necessity for rigour in rare disease study design, Lancet Oncol, 20, 1190, 10.1016/S1470-2045(19)30323-7
American Cancer Society, Cancer Facts & Figures. 2021, American Cancer Society: Atlanta, Georgia.
Kallen, 2021, The 2020 WHO classification: what's new in soft tissue tumor pathology?, Am J Surg Pathol, 45, e1, 10.1097/PAS.0000000000001552
Sbaraglia, 2020, The 2020 WHO classification of soft tissue tumours: news and perspectives, Pathologica, 10.32074/1591-951X-213
NORD Rare Cancer Coalition. 2017 January 30, 2021]; Available from: https://rarediseases.org/get-involved/rare-cancer-coalition/. Access date: January 30, 2021.
Campos-Castelló, 2001, [Orphan drugs and orphan diseases], Rev Neurol, 33, 216
Thomas, 2019, The orphan drug act revisited, Jama, 321, 833, 10.1001/jama.2019.0290
SWOG Patient Advocate Resource Guide, SWOG, Editor. 2018.
Deverka, 2018, A new framework for patient engagement in cancer clinical trials cooperative group studies, J Natl Cancer Inst, 110, 553, 10.1093/jnci/djy064
Katz, 2012, Patient advocates' role in clinical trials: perspectives from Cancer and Leukemia Group B investigators and advocates, Cancer, 118, 4801, 10.1002/cncr.27485
2021
Billingham, 2016, Research methods to change clinical practice for patients with rare cancers, Lancet Oncol, 17, e70, 10.1016/S1470-2045(15)00396-4
Wilson, 2015, Outcomes and endpoints in trials of cancer treatment: the past, present, and future, Lancet Oncol, 16, e32, 10.1016/S1470-2045(14)70375-4
2019