- Carlisle B, Kimmelman J, Ramsay T, MacKinnon N: Unsuccessful trial accrual and
human subjects protections: an empirical analysis of recently closed trials. Clin Trials.
2015;12:77-83.
- Cheng K, Gupta SK, Kantor S, Kuhl JT, Aceves SS, Bonis PA, et al: Creating a multi-
center rare disease consortium – the Consortium of Eosinophilic Gastrointestinal Disease
Researchers (CEGIR). Transl Sci Rare Dis. 2017;2(3-4):141-155.
- Kitterman DR, Cheng SK, Dilts DM, Orwoll ES. The prevalence and economic impact of
low-enrolling clinical studies at an academic medical center. Acad Med. 2011;86:1360-
1366.
- Glickman SW, McHutchison JG, Peterson ED, Cairns CB, Harrington RA, Califf RM, et
al: Ethical and scientific implications of the globalization of clinical research. N Engl J
Med. 2009;360:816-823.
- Hanauer SB: Outsourcing clinical trials. Nat Rev Gastroenterol Hepatol. 2009;6:191.
- Peters-Lawrence MH, Bell MC, Hsu LL, Osunkwo I, Seaman P, Blackwood M, et al:
Clinical trial implementation and recruitment: lessons learned from the early closure of a
randomized controlled trial. Contemp Clin Trials. 2012;33:291-297.
- Torgerson JS, Arlinger K, Kappi M, Sjostrom L: Principles for enhanced recruitment of
subjects in a large clinical trial. Control Clin Trials. 2001;22:515-525.
- Malmqvist E, Juth N. Lynöe N, Helgesson G: Early stopping of clinical trials: charting
the ethical terrain. Kennedy Inst Ethics J. 2011;21:51-78.
- Richesson RL, Lee HS, Cuthbertson D, Young K, Krischer JP: An automated
communication system in a contact registry for persons with rare diseases: scalable tools
for identifying and recruiting clinical research participants. Contemp Clin Trials.
2009;30:55-62.
- Donohue JM, Cevasco M, Rosenthal MB: A decade of direct-to-consumer advertising of
prescription drugs. N Engl J Med. 2007;357:673-681.
- Applequist J: Broadcast pharmaceutical advertising in the United States: primetime pill
pushers. Lanham: Lexington; 2016.
- Smith SK, Selig W, Harker M, Roberts JN, Hesterlee S, Leventhal D, et al: Patient
engagement practices in clinical research among patient groups, industry, and academia in
the United States: a survey. PLoS One. 2015;10:e0140232.
- Paul J, Seib R, Prescott T: The internet and clinical trials: background, online resources,
examples and issues. J Med Internet Res. 2005;7(1):e5.
- Marks R, Bristol H, Conlon M, Pepine CJ: Enhancing clinical trials on the internet: lessons
from INVEST. Clin Cardiol. 2001;24:17-23.
- Kopcke F, Prokosch HU: Employing computers for the recruitment into clinical trials: a
comprehensive systematic review. J Med Internet Res. 2014;16(7):e161.
- Williams IC, Rexrode DL: Beyond traditional advertisements: leveraging Facebook’s
social structures for research recruitment. J Med Internet Res. 2014 Oct;16(10):e243.
- Glasgow RE, Nelson CC, Kearney KA, Reid R, Ritzwoller DP, Strecher VJ, et al: Reach,
engagement, and retention in an internet-based weight loss program in a multi-site
randomized controlled trial. J Med Internet Res. 2007;9(2):e11.
- Bull SS, Vallejos D, Levine D, Ortiz C: Improving recruitment and retention for an online
randomized controlled trial: experience from the Youthnet study. AIDS Care. 2008;20:887-
893.
- Morgan AJ, Jorm AF, Mackinnon AJ: Internet-based recruitment to a depression
prevention intervention: lessons from the Mood Memos study. J Med Internet Res.
2013;15(2):e31.
- Lohse B, Wamboldt P: Purposive Facebook recruitment endows cost-effective nutrition
education program evaluation. JMIR Res Protoc. 2013;2(2):e27.
- Fenner Y, Garland SM, Moore EE, Jayasinghe Y, Fletcher A, Tabrizi SN, et al: Web-based
recruiting for health research using a social networking site: an exploratory study. J Med
Internet Res. 2012;14(1):e20.
- Kapp JM, Peters C, Oliver DP: Research recruitment using Facebook advertising: big
potential, big challenges. J Cancer Educ. 2013;28:134-137.
- Heffner JL, Wyszynski CM, Comstock B, Mercer LD, Bricker J: Overcoming recruitment
challenges of web-based intervention for tobacco use: the case of web-based acceptance
and commitment therapy for smoking cessation. Addict Behav. 2013;38:2473-2476.
- Hampton T: Rare disease research gets boost. JAMA. 2006;295:2836-2838.
- Aitken L, Gallagher R, Madronio C: Principles of recruitment and retention in clinical
trials. Int J Nurs Pract. 2003;9:338-346.
- Rare Diseases Act of 2002. [Page 116 STAT, 1988] Public Law 107-280. 107th Congress,
https://www.congress.gov/bill/107th-congress/house-bill/4013.
- Krischer J, Cronholm PF, Burroughs C, McAlear C, Borchin R, Easley E, et al: Experience
with direct-to-patient recruitment for enrollment into a clinical trial in a rare disease: a web-
based study. J Med Internet Res. 2017;19(2):e50.
- Tong A, Sainsbury P, Craig J: Consolidated criteria for reporting qualitative research
(COREQ): a 32-item checklist for interviews and focus groups. I J Qual Health C.
2007;19(6):349-357.
- English M: Designing a theory-informed, contextually appropriate intervention strategy
to improve delivery of paediatric services in Kenyan hospitals. Implement Sci. 2013;8:1-
13.
- Zeldman J: Taking your talent to the web: making the transition from graphic design to
web design. San Francisco: New Riders, 2001.
- Fishbein M: Introduction to the special section: project SAFER: using theory to identify
critical targets for HIV prevention interventions. Psychol Health Med. 2001;6:137-138.
- Maibach E, Parrott RL: Designing health messages: approaches from communication
theory and public health practice. Thousand Oaks: Sage; 1995.
- Smith A, Anderson M. Social media use in 2018. Pew Research Center. 2018.
https://www.pewinternet.org/2018/03/01/social-media-use-in-2018/. Accessed 30
September 2019.
- Fischhoff B: Why (cancer) risk communication can be hard. J Natl Cancer Inst Monogr.
1999;25:7-13.
- Atkin CK, Freimuth VS: Formative evaluation research in campaign design. In: Rice RE,
Atkin CK, editors. Public communication campaigns. Thousand Oaks, CA: Sage; 2001.
- 125-145.
- Nowak GJ, Siska MJ: Using research to inform campaign development and message
design: examples from the “American responds to AIDS” campaign. In: Maibach E,
Parrott RL, editors. Designing health messages: approaches from communication theory
and public health practice. Thousand Oaks, CA: Sage; 1995. p. 169-185.
- Lewis I, Watson B, White KM: The step approach to message design and testing
(SatMDT): a conceptual framework to guide the development and evaluation of
persuasive health messages. Accid Anal Prev. 2015;97:309-314.
- Merkel PA, Manion M, Gopal-Srivastava R, Groft S, Jinnah AH, Robertson D, Krischer
JP: The partnership of patient advocacy groups and clinical investigators in the rare
disease clinical research network. Orphanet J Rare Dis. 2016;11:1-10.
- Cheng K, Gupta SK, Kantor S, Kuhl JT, Aceves SS, Bonis PA, et al: Creating a multi-
center rare disease consortium – the Consortium of Eosinophilic Gastrointestinal Disease
Researchers (CEGIR). Transl Sci Rare Dis. 2017;2(3-4):141-155.
- Andreasen A: Marketing social change. San Francisco: Jossey-Bass; 1995.
- Kotler P, Roberto N, Lee N: Social marketing: Improving the quality of life. Thousand
Oaks: Sage; 2002.
- Luck J, Hagigi F, Parker LE, Yano EM, Rubenstein LV, Kirchner JE: A social marketing
approach to implementing evidence-based practice in VHA QUERI: the TIDES
depression collaborative care model. Implement Sci. 2009;4:1-12.
- Health literacy basics. U.S. Department of Health and Human Services.
https://health.gov/communication/literacy/quickguide/factsbasic.htm. Accessed 18
September 2019.
- Kiefe CI, Sales A: A state of-the-art conference on implementing evidence in health care:
reasons and recommendations. J Gen Intern Med. 2006;21:S67-70.
- Petty RE, Cacioppo JT: The ELM of persuasion. In: Berkowitz S, editor. Advances in
experimental social psychology. New York: Academic; 1986. p. 123-205.
- Quinn V, Meenaghan T, Brannick T: Fear appeals: segmentation is the way to go. Int J
Adv. 1992;11:333-366.
- Rotfeld H: Misplaced marketing commentary: social marketing and myths of appeals to
fear. J Consum Market. 1999;16:119-121.
- Smith SK, Selig W, Harker M, Roberts JN, Hesterlee S, Leventhal D, et al: Patient
engagement practices in clinical research among patient groups, industry, and academia in
the United States: a survey. PLoS One. 2015;10:e0140232.
- Paul J, Seib R, Prescott T: The internet and clinical trials: background, online resources,
examples and issues. J Med Internet Res. 2005;7(1):e5.
- Marks R, Bristol H, Conlon M, Pepine CJ: Enhancing clinical trials on the internet: lessons
from INVEST. Clin Cardiol. 2001;24:17-23.
- Kopcke F, Prokosch HU: Employing computers for the recruitment into clinical trials: a
comprehensive systematic review. J Med Internet Res. 2014;16(7):e161.
- Williams IC, Rexrode DL: Beyond traditional advertisements: leveraging Facebook’s
social structures for research recruitment. J Med Internet Res. 2014 Oct;16(10):e243.
- Glasgow RE, Nelson CC, Kearney KA, Reid R, Ritzwoller DP, Strecher VJ, et al: Reach,
engagement, and retention in an internet-based weight loss program in a multi-site
randomized controlled trial. J Med Internet Res. 2007;9(2):e11.
- Bull SS, Vallejos D, Levine D, Ortiz C: Improving recruitment and retention for an online
randomized controlled trial: experience from the Youthnet study. AIDS Care. 2008;20:887-
893.
- Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott R: Barriers to participation
in randomized controlled trials: a systematic review. J Clin Epidemiol. 1999;52:1143-
1156.