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Review
. 2020 Mar;7(2):143-151.
doi: 10.1093/nop/npz049. Epub 2019 Oct 1.

Social media partnerships with patient organizations for neuro-oncology patient recruitment

Elizabeth B Claus  1   2 , Josemari Feliciano  1 , Luke S Benz  1 , Lisa Calvocoressi  1
Affiliations
Review

Social media partnerships with patient organizations for neuro-oncology patient recruitment

Elizabeth B Claus et al. Neurooncol Pract. 2020 Mar.

Abstract

Background: In neuro-oncology, traditional methods of enrolling the large numbers of participants required for 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 partnered with several brain tumor patient organizations to develop social media enrollment campaigns and 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 over 2 years. Of these, 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 (94.8% 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 at a fraction of the cost relative to traditional methods.

Keywords: registry; social media; acoustic neuroma; low-grade glioma; patient organization.

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Figures

Fig. 1
Fig. 1
Network Analysis of Quotes for Glioma and #Glioma on Twitter 2018 (Names of persons relabeled as #1, #2, …). theABTA indicates the American Brain Tumor Association; AJNR, AJNR American Journal of Neuroradiology; The_ASPNR, American Society of Pediatric Neuroradiology; BrainTumourOrg, The Brain Tumour Charity; CleClinMD, Cleveland Clinic MD; theIBTA, International Brain Tumour Alliance; ICR_London, The Institute of Cancer Research, London; TheLancetOncol, Lancet Oncology; JNeurooncol, Journal of Neuro-Oncology; NEJM, New England Journal of Medicine; NICEGetInvolved, Get Involved at NICE; SPRneuro, Neuroradiology Committee of The Society for Pediatric Radiology.
See this image and copyright information in PMC

References

    1. Claus EB, Cornish AJ, Broderick P, et al. . Genome-wide association analysis identifies a meningioma risk locus at 11p15.5. Neuro Oncol. 2018;20(11):1485–1493. - PMC - PubMed
    1. Melin BS, Barnholtz-Sloan JS, Wrensch MR, et al. ; GliomaScan Consortium Genome-wide association study of glioma subtypes identifies specific differences in genetic susceptibility to glioblastoma and non-glioblastoma tumors. Nat Genet. 2017;49(5):789–794. - PMC - PubMed
    1. National Institutes of Health, Research Portfolio Online Reporting Tools. Rare Diseases Clinical Research Network. 2018. https://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=126. Accessed July 24, 2019.
    1. Pew Research Center. Internet/Broadband Fact Sheet. 2018. https://www.pewinternet.org/fact-sheet/internet-broadband/. Accessed July 24, 2019.
    1. Pew Research Center. Share of U.S. Adults Using Social Media, Including Facebook, is Mostly Unchanged Since 2018. 2019. https://www.pewresearch.org/fact-tank/2019/04/10/share-of-u-s-adults-usi.... Accessed July 24, 2019.