干旱区生态环境知识资源中心(Arid): Social media partnerships with patient organizations for neuro-oncology patient recruitment

Arid

DOI	10.1093/nop/npz049
	Social media partnerships with patient organizations for neuro-oncology patient recruitment
	Claus, Elizabeth B.; Feliciano, Josemari; Benz, Luke S.; Calvocoressi, Lisa
通讯作者	Claus, EB
来源期刊	NEURO-ONCOLOGY PRACTICE
ISSN	2054-2577
EISSN	2054-2585
出版年	2020
卷号	7 期号:2 页码:143-151
英文摘要	Background. In neuro-oncology, traditional-methods of enrolling the large numbers of participants required or studies of disease etiology and treatment response are costly, labor intensive, and may not include patients in regions without tumor registries. Methods. In the Yale Acoustic Neuroma (AN) Study and International Low-Grade Glioma (LGG) Registry, we partenered with several brain tumor patient organizations to develop social media enrollment campaigns arid use web-based data collection resources at the Yale University School of Public Health to test alternative methods to enroll neuro-oncology patients for epidemiologic study. Results. In the AN study, we enrolled 1024 patients overt years h s , 865 patients completed the online questionnaire, 697 returned written consent, 583 sent a pathology report, and 569 returned a saliva specimen. The completed 569 participants did not differ by age or treatment from the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) data but were more likely to be female (67% vs 52%) and white 04.8% vs 84%). Patients learned of the study through the Acoustic Neuroma Association (ANA) website (61.3%), ANA support group members (18%), and social media {primarily Facebook). Costs per patient enrolled were approximately 10% to 20% that of traditional registry-based enrollment methods. Results for the LGG study were similar. Conclusions. Although additional effort will be required to ensure a diverse participant population, partnership with established patient organizations along with use of web-based technology and social media allowed for the successful enrollment of neuro-oncology patients a n of the cost relative to traditional methods.
英文关键词	acoustic neuroma low-grade glioma patient organization registry social media
类型	Article
语种	英语
收录类别	ESCI
WOS记录号	WOS:000536505600003
WOS关键词	GENOME-WIDE ASSOCIATION ; ISSUES
WOS类目	Clinical Neurology
WOS研究方向	Neurosciences & Neurology
资源类型	期刊论文
条目标识符	http://119.78.100.177/qdio/handle/2XILL650/334383
作者单位	[Claus, Elizabeth B.; Feliciano, Josemari; Benz, Luke S.; Calvocoressi, Lisa] Yale Univ, Dept Biostat, Sch Publ Hlth, New Haven, CT 06520 USA; [Claus, Elizabeth B.] Brigham & Womens Hosp, Dept Neurosurg, 75 Francis St, Boston, MA 02115 USA
推荐引用方式 GB/T 7714	Claus, Elizabeth B.,Feliciano, Josemari,Benz, Luke S.,et al. Social media partnerships with patient organizations for neuro-oncology patient recruitment[J],2020,7(2):143-151.
APA	Claus, Elizabeth B.,Feliciano, Josemari,Benz, Luke S.,&Calvocoressi, Lisa.(2020).Social media partnerships with patient organizations for neuro-oncology patient recruitment.NEURO-ONCOLOGY PRACTICE,7(2),143-151.
MLA	Claus, Elizabeth B.,et al."Social media partnerships with patient organizations for neuro-oncology patient recruitment".NEURO-ONCOLOGY PRACTICE 7.2(2020):143-151.