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However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self\u2010identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1\u2010year period from 1\/1\/2012 to 12\/31\/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1\u2010year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n\u2009=\u2009550, 72% Facebook), followed by healthcare providers (n\u2009=\u200974), and government and academic websites (n\u2009=\u200971). The mean participant age was 29\u2009\u00b1\u200918 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. \u00a9 2014 Wiley Periodicals, Inc.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ajmg.a.36530","type":"journal-article","created":{"date-parts":[[2014,4,3]],"date-time":"2014-04-03T19:59:16Z","timestamp":1396555156000},"page":"1686-1694","source":"Crossref","is-referenced-by-count":40,"title":["Evaluation of participant recruitment methods to a rare disease online registry"],"prefix":"10.1002","volume":"164","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8152-7319","authenticated-orcid":false,"given":"Kimberly J.","family":"Johnson","sequence":"first","affiliation":[{"name":"Brown School Washington University St. Louis Missouri"},{"name":"Department of Pediatrics School of Medicine Washington University St. Louis Missouri"},{"name":"Siteman Cancer Center Washington University St. Louis Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nancy L.","family":"Mueller","sequence":"additional","affiliation":[{"name":"Brown School Washington University St. Louis Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katherine","family":"Williams","sequence":"additional","affiliation":[{"name":"Brown School Washington University St. Louis Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David H.","family":"Gutmann","sequence":"additional","affiliation":[{"name":"Department of Neurology School of Medicine Washington University St. Louis Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,4,3]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1089\/jwh.2009.1751"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.2286"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/brain\/122.3.473"},{"key":"e_1_2_7_5_1","first-page":"181","volume-title":"A clinical, pathological, and genetic study of multiple neurofibromatosis","author":"Crowe FW","year":"1956"},{"key":"e_1_2_7_6_1","unstructured":"Facebook.Facebook reports fourth quarter and full year 2012 results. 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European Commission Health\u2010Eu.http:\/\/ec.europa.eu\/health\u2010eu\/health_problems\/rare_diseases\/index_en.htm(Accessed May 3 2013)."},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.seizure.2011.04.016"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e3181bf15e3"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.68.5.643"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cct.2012.12.002"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1093\/alcalc\/agr080"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.gcb.2010.06.007"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/0888-7543(91)90017-9"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-6-11"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1651-2227.2008.01183.x"},{"key":"e_1_2_7_22_1","unstructured":"Myotonic Dystrophy Family Registry.http:\/\/www.myotonic.org\/patient\u2010registry(Accessed November 11 2013)."},{"key":"e_1_2_7_23_1","unstructured":"North American Research Committee on Multiple Sclerosis.http:\/\/narcoms.org\/about(Accessed November 11 2013)."},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1097\/OLQ.0b013e3182383097"},{"key":"e_1_2_7_25_1","unstructured":"Patients Like Me.http:\/\/www.patientslikeme.com\/about(Accessed November 11 2013)."},{"key":"e_1_2_7_26_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.71.5.679"},{"key":"e_1_2_7_27_1","unstructured":"PewInternet.org.2011.Social networking sites and our lives. 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