This paper is in the following e-collection/theme issue:

Participatory Medicine & E-Patients (758)

Published on in Vol 15, No 3 (2013): March

Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome

Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome

Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome

Authors of this article:

Sharron Close1 ;   Arlene Smaldone2 ;   Ilene Fennoy3 ;   Nancy Reame2 ;   Margaret Grey1
Article Authors Cited by (58) Tweetations (43) Metrics

Journals

  1. Nolte M, Shauver M, Chung K. Analysis of Four Recruitment Methods for Obtaining Normative Data through a Web-Based Questionnaire: A Pilot Study. HAND 2015;10(3):529 View
  2. Davies B, Kotter M. Lessons From Recruitment to an Internet-Based Survey for Degenerative Cervical Myelopathy: Comparison of Free and Fee-Based Methods. JMIR Research Protocols 2018;7(2):e18 View
  3. Thornton L, Harris K, Baker A, Johnson M, Kay‐Lambkin F. Recruiting for addiction research via Facebook. Drug and Alcohol Review 2016;35(4):494 View
  4. Lammert C, Comerford M, Love J, Bailey J. Investigation Gone Viral: Application of the Social Mediasphere in Research. Gastroenterology 2015;149(4):839 View
  5. Thornton L, Batterham P, Fassnacht D, Kay-Lambkin F, Calear A, Hunt S. Recruiting for health, medical or psychosocial research using Facebook: Systematic review. Internet Interventions 2016;4:72 View
  6. Dwyer A, Quinton R, Morin D, Pitteloud N. Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support. Orphanet Journal of Rare Diseases 2014;9(1):83 View
  7. Merolli M, Busuttil M, Wåhlin C, Green A. Global communication practices of physiotherapists on Twitter. European Journal of Physiotherapy 2019;21(1):20 View
  8. Whitaker C, Stevelink S, Fear N. The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review. Journal of Medical Internet Research 2017;19(8):e290 View
  9. Raviotta J, Nowalk M, Lin C, Huang H, Zimmerman R. Using Facebook™ to Recruit College-Age Men for a Human Papillomavirus Vaccine Trial. American Journal of Men's Health 2016;10(2):110 View
  10. Merolli M, Gray K, Martin-Sanchez F, Mantopoulos S, Hogg M. Using Social Media While Waiting in Pain: A Clinical 12-Week Longitudinal Pilot Study. JMIR Research Protocols 2015;4(3):e101 View
  11. Mesquita A, Zamarioli C, Fulquini F, Carvalho E, Angerami E. Social networks in nursing work processes: an integrative literature review. Revista da Escola de Enfermagem da USP 2017;51(0) View
  12. Casañas i Comabella C, Wanat M. Using social media in supportive and palliative care research: Table 1. BMJ Supportive & Palliative Care 2015;5(2):138 View
  13. Merolli M, Gray K, Martin-Sanchez F. Therapeutic Affordances of Social Media: Emergent Themes From a Global Online Survey of People With Chronic Pain. Journal of Medical Internet Research 2014;16(12):e284 View
  14. Close S, Sadler L, Grey M. In the Dark: Challenges of Caring for Sons with Klinefelter Syndrome. Journal of Pediatric Nursing 2016;31(1):11 View
  15. Massawe I, Lusingu J, Manongi R. Community perception on biomedical research: A case study of malariometric survey in Korogwe District, Tanga Region, Tanzania. BMC Public Health 2014;14(1) View
  16. Rait M, Prochaska J, Rubinstein M. Recruitment of adolescents for a smoking study: use of traditional strategies and social media. Translational Behavioral Medicine 2015;5(3):254 View
  17. Moreno M, Waite A, Pumper M, Colburn T, Holm M, Mendoza J. Recruiting Adolescent Research Participants: In-Person Compared to Social Media Approaches. Cyberpsychology, Behavior, and Social Networking 2017;20(1):64 View
  18. García-Cruz E, Romero-Otero J, Fode M, Alcaraz A. El entorno digital en los trastornos sexuales masculinos: revisión sistemática. Actas Urológicas Españolas 2018;42(6):365 View
  19. Pires D, Boasquevisque D, Speciali D, Silva G, Conforto A. Success of promotion strategies for a stroke rehabilitation protocol. Revista da Associação Médica Brasileira 2018;64(5):443 View
  20. Hendricks S, Düking P, Mellalieu S. Twitter Strategies for Web-Based Surveying: Descriptive Analysis From the International Concussion Study. JMIR Research Protocols 2016;5(3):e179 View
  21. Hokke S, Hackworth N, Quin N, Bennetts S, Win H, Nicholson J, Zion L, Lucke J, Keyzer P, Crawford S, Jan Y. Ethical issues in using the internet to engage participants in family and child research: A scoping review. PLOS ONE 2018;13(9):e0204572 View
  22. Milton A, Davenport T, Iorfino F, Flego A, Burns J, Hickie I. Suicidal Thoughts and Behaviors and Their Associations With Transitional Life Events in Men and Women: Findings From an International Web-Based Sample. JMIR Mental Health 2020;7(9):e18383 View
  23. Yuan P, Bare M, Johnson M, Saberi P. Using Online Social Media for Recruitment of Human Immunodeficiency Virus-Positive Participants: A Cross-Sectional Survey. Journal of Medical Internet Research 2014;16(5):e117 View
  24. García-Cruz E, Romero-Otero J, Fode M, Alcaraz A. The digital environment in men's sexual disorders: A systematic review. Actas Urológicas Españolas (English Edition) 2018;42(6):365 View
  25. McLawhorn J, Balamurugan A, Gardner J, Kaley J, George M. Using Social Media to Assess Mental Health and Quality of Care Among Patients With Darier Disease. Journal of the Dermatology Nurses' Association 2019;11(2):79 View
  26. Schwinn T, Hopkins J, Schinke S, Liu X. Using Facebook ads with traditional paper mailings to recruit adolescent girls for a clinical trial. Addictive Behaviors 2017;65:207 View
  27. Kempf L, Goldsmith J, Temple R. Challenges of developing and conducting clinical trials in rare disorders. American Journal of Medical Genetics Part A 2018;176(4):773 View
  28. Merolli M, Gray K, Martin-Sanchez F, Lopez-Campos G. Patient-Reported Outcomes and Therapeutic Affordances of Social Media: Findings From a Global Online Survey of People With Chronic Pain. Journal of Medical Internet Research 2015;17(1):e20 View
  29. Root Kustritz M. Use of Facebook as a Teaching Tool in a Veterinary Communications Course. Journal of Veterinary Medical Education 2013;40(4):327 View
  30. Machado N, Gomide H, Bernardino H, Ronzani T. Facebook recruitment of smokers: comparing gain- and loss-framed ads for the purposes of an Internet-based smoking cessation intervention. Cadernos de Saúde Pública 2019;35(10) View
  31. Amon K, Campbell A, Hawke C, Steinbeck K. Facebook as a Recruitment Tool for Adolescent Health Research: A Systematic Review. Academic Pediatrics 2014;14(5):439 View
  32. Knox E, Glazebrook C, Randell T, Leighton P, Guo B, Greening J, Davies E, Amor L, Blake H. SKIP (Supporting Kids with diabetes In Physical activity): Feasibility of a randomised controlled trial of a digital intervention for 9-12 year olds with type 1 diabetes mellitus. BMC Public Health 2019;19(1) View
  33. Crump R, Lau R, Cox E, Currie G, Panepinto J. Testing the feasibility of eliciting preferences for health states from adolescents using direct methods. BMC Pediatrics 2018;18(1) View
  34. Araújo E, Almeida C, Vaz J, Magalhães E, Alcantara C, Lago E. Use of Social Networks for Data Collection in Scientific Productions in the Health Area: Integrative Literature Review. Aquichan 2019;19(2) View
  35. Akard T, Wray S, Gilmer M. Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences. Cancer Nursing 2015;38(2):155 View
  36. McHugh K, Swamy G, Hernandez A. Engaging patients throughout the health system: A landscape analysis of cold-call policies and recommendations for future policy change. Journal of Clinical and Translational Science 2018;2(6):384 View
  37. Johnson K, Mueller N, Williams K, Gutmann D. Evaluation of participant recruitment methods to a rare disease online registry. American Journal of Medical Genetics Part A 2014;164(7):1686 View
  38. Pedersen E, Kurz J. Using Facebook for health-related research study recruitment and program delivery. Current Opinion in Psychology 2016;9:38 View
  39. Palma J, Kaufmann H. Clinical Trials for Neurogenic Orthostatic Hypotension: A Comprehensive Review of Endpoints, Pitfalls, and Challenges. Seminars in Neurology 2020 View
  40. Amendola L, Robinson J, Hart R, Biswas S, Lee K, Bernhardt B, East K, Gilmore M, Kauffman T, Lewis K, Roche M, Scollon S, Wynn J, Blout C. Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium. Journal of Genetic Counseling 2018;27(5):1220 View
  41. Milton A, La Monica H, Dowling M, Yee H, Davenport T, Braunstein K, Flego A, Burns J, Hickie I. Gambling and the Role of Resilience in an International Online Sample of Current and Ex-serving Military Personnel as Compared to the General Population. Journal of Gambling Studies 2020;36(2):477 View
  42. Yu J, Paranagama D, Parasuraman S, Li Y. Recruitment strategies and geographic representativeness for patient survey studies in rare diseases: Experience from the living with myeloproliferative neoplasms patient survey. PLOS ONE 2020;15(12):e0243562 View
  43. Waling A, Lyons A, Alba B, Minichiello V, Barrett C, Hughes M, Fredriksen-Goldsen K. Recruiting stigmatised populations and managing negative commentary via social media: a case study of recruiting older LGBTI research participants in Australia. International Journal of Social Research Methodology 2022;25(2):157 View
  44. Mackenzie E, Berger N, Holmes K, Walker M. Online educational research with middle adolescent populations: Ethical considerations and recommendations. Research Ethics 2021;17(2):217 View
  45. Waltereit R, Beaure d’Augères G, Jancic J, Kingswood J, Koleva M, Marques R, Villanueva V, Auvin S. Involvement of mental health professionals in the treatment of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND): results of a multinational European electronic survey. Orphanet Journal of Rare Diseases 2021;16(1) View
  46. Zimmermann B, Willem T, Bredthauer C, Buyx A. Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework. Journal of Medical Internet Research 2022;24(5):e31231 View
  47. Darko E, Kleib M, Olson J. Social Media Use for Research Participant Recruitment: Integrative Literature Review. Journal of Medical Internet Research 2022;24(8):e38015 View
  48. Kaar J, Markovic N, Amsden L, Gilliland J, Shorter C, Peters B, Nachreiner N, Garel M, Nicholas W, Skarpness B, Drews-Botsch C, Hogue C, Dabelea D. The Experience of Direct Outreach Recruitment in the National Children’s Study. Pediatrics 2016;137(Supplement_4):S258 View
  49. Mühlhoff R, Willem T. Social media advertising for clinical studies: Ethical and data protection implications of online targeting. Big Data & Society 2023;10(1):205395172311561 View
  50. Francisco R, Brasil S, Pascoal C, Jaeken J, Liddle M, Videira P, dos Reis Ferreira V. The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ). Orphanet Journal of Rare Diseases 2022;17(1) View
  51. Schumacher K, Stringer K, Donohue J, Yu S, Shaver A, Caruthers R, Zikmund-Fisher B, Fifer C, Goldberg C, Russell M. Social Media Methods for Studying Rare Diseases. Pediatrics 2014;133(5):e1345 View
  52. Milton A, Hambleton A, Roberts A, Davenport T, Flego A, Burns J, Hickie I. Body Image Distress and Its Associations From an International Sample of Men and Women Across the Adult Life Span: Web-Based Survey Study. JMIR Formative Research 2021;5(11):e25329 View
  53. Mumtaz H, Riaz M, Wajid H, Saqib M, Zeeshan M, Khan S, Chauhan Y, Sohail H, Vohra L. Current challenges and potential solutions to the use of digital health technologies in evidence generation: a narrative review. Frontiers in Digital Health 2023;5 View
  54. Chang A, Huang S, Benjamin D, Schmidt J, Palmer C, Garrison N. Exploring the role of digital tools in rare disease management: An interview‐based study. Journal of Genetic Counseling 2024 View
  55. Michaleff Z, Campbell P, Hay A, Warburton L, Dunn K. Child and adolescent musculoskeletal pain (CAM-Pain) feasibility study: testing a method of identifying, recruiting and collecting data from children and adolescents who consult about a musculoskeletal condition in UK general practice. BMJ Open 2018;8(6):e021116 View

Books/Policy Documents

  1. Palma J, Kaufmann H. Clinical Trials In Parkinson's Disease. View
  2. Kagan J. Impacts of Information Technology on Patient Care and Empowerment. View
  3. Kagan J. Research Anthology on Telemedicine Efficacy, Adoption, and Impact on Healthcare Delivery. View