Published on in Vol 6, No 1 (2017): January

The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example

The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example

The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example

Journals

  1. Zhao Y, Guo Y, He X, Wu Y, Yang X, Prosperi M, Jin Y, Bian J. Assessing mental health signals among sexual and gender minorities using Twitter data. Health Informatics Journal 2020;26(2):765 View
  2. Stephenson N, Hetherington E, Dodd S, Mathews A, Tough S. Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort. Journal of Medical Internet Research 2019;21(2):e10441 View
  3. 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
  4. Benedict C, Hahn A, Diefenbach M, Ford J. Recruitment via social media: advantages and potential biases. DIGITAL HEALTH 2019;5:205520761986722 View
  5. White W. A rare disease patient/caregiver perspective on fair pricing and access to gene-based therapies. Gene Therapy 2020;27(10-11):474 View
  6. Ford M, Camp J, Geiger T, Hopkins M, Muldoon R, Prestwich A, LaNeve D, Hawkins A. Assessing Hereditary Colorectal Cancer Referral Patterns to a Tertiary Care Center: A Novel Approach Using Geographic Information System Mapping. Diseases of the Colon & Rectum 2019;62(7):840 View
  7. Allen C, Peterson S, Khoury M, Brody L, McBride C. A scoping review of social and behavioral science research to translate genomic discoveries into population health impact. Translational Behavioral Medicine 2021;11(4):901 View
  8. Bian J, Zhao Y, Salloum R, Guo Y, Wang M, Prosperi M, Zhang H, Du X, Ramirez-Diaz L, He Z, Sun Y. Using Social Media Data to Understand the Impact of Promotional Information on Laypeople’s Discussions: A Case Study of Lynch Syndrome. Journal of Medical Internet Research 2017;19(12):e414 View
  9. Glavind J, Boie S, Glavind E, Fuglsang J. Risk of recurrent acute fatty liver of pregnancy: survey from a social media group. American Journal of Obstetrics & Gynecology MFM 2020;2(2):100085 View
  10. Parker W, Hennig K, Burton-Chase A. For Women, Lynch Syndrome Is About More than Colon Cancer. Cancer Prevention Research 2019;12(12):831 View
  11. Fenton V, Fletcher L, Bowles J, Hennig K, Burton-Chase A. Assessing Advance Care Planning in Individuals with Lynch Syndrome. SN Comprehensive Clinical Medicine 2021;3(2):562 View
  12. 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
  13. Broughel E, Hennig K, Chu R, Parker W, Campo-Engelstein L, Burton-Chase A. Factors Impacting the Decision of an Individual With Lynch Syndrome to Terminate a Health Care Provider Relationship. Journal of Patient Experience 2021;8:237437352110087 View
  14. Carlock G, Manning K, Leslie E. Feasibility of Social Media Recruitment for Orofacial Cleft Genetic Research. The Cleft Palate-Craniofacial Journal 2021:105566562110244 View
  15. Hutchesson M, Gough C, Müller A, Short C, Whatnall M, Ahmed M, Pearson N, Yin Z, Ashton L, Maher C, Staiano A, Mauch C, DeSmet A, Vandelanotte C. eHealth interventions targeting nutrition, physical activity, sedentary behavior, or obesity in adults: A scoping review of systematic reviews. Obesity Reviews 2021 View

Books/Policy Documents

  1. Marques-da-Silva D, Francisco R, dos Reis Ferreira V, Forbat L, Lagoa R, Videira P, Witters P, Jaeken J, Cassiman D. JIMD Reports, Volume 44. View