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Recruitment & retention program for the NeuroNEXT SMA Biomarker Study: Super Babies for SMA!

Bartlett A, Kolb SJ, Kingsley A, Swoboda KJ, Reyna SP, Sakonju A, Darras BT, Shell R, Kuntz N, Castro D, Iannaccone ST, Parsons J, Connolly AM, Chiriboga CA, McDonald C, Burnette WB, Werner K, Thangarajh M, Shieh PB, Finanger E, Coffey CS, Yankey JW, Cudkowicz ME, McGovern MM, McNeil DE, Arnold WD, Kissel JT; NeuroNEXT Clinical Trial Network and on behalf of the NN101 SMA Biomarker Investigators.

Contemp Clin Trials Commun. 2018 Jul 20;11:113-119. doi: 10.1016/j.conctc.2018.07.002. eCollection 2018 Sep.


Baseline results of the NeuroNEXT spinal muscular atrophy infant biomarker study.

Kolb SJ, Coffey CS, Yankey JW, Krosschell K, Arnold WD, Rutkove SB, Swoboda KJ, Reyna SP, Sakonju A, Darras BT, Shell R, Kuntz N, Castro D, Iannaccone ST, Parsons J, Connolly AM, Chiriboga CA, McDonald C, Burnette WB, Werner K, Thangarajh M, Shieh PB, Finanger E, Cudkowicz ME, McGovern MM, McNeil DE, Finkel R, Kaye E, Kingsley A, Renusch SR, McGovern VL, Wang X, Zaworski PG, Prior TW, Burghes AH, Bartlett A, Kissel JT; NeuroNEXT Clinical Trial Network and on behalf of the NN101 SMA Biomarker Investigators.

Ann Clin Transl Neurol. 2016 Jan 21;3(2):132-45. doi: 10.1002/acn3.283. eCollection 2016 Feb.


Horizon Scan: To What Extent Do Changes in Third-Party Payment Affect Clinical Trials and the Evidence Base? [Internet].

Abernethy AP, Allen Lapointe NM, Wheeler JL, Irvine RJ, Patwardhan M, Matchar D.

Rockville (MD): Agency for Healthcare Research and Quality (US); 2009 Aug 28.


Reaching Adolescent Gay, Bisexual, and Queer Men Online: Development and Refinement of a National Recruitment Strategy.

Prescott TL, Phillips Ii G, DuBois LZ, Bull SS, Mustanski B, Ybarra ML.

J Med Internet Res. 2016 Aug 4;18(8):e200. doi: 10.2196/jmir.5602.


The Use of Facebook Advertising to Recruit Healthy Elderly People for a Clinical Trial: Baseline Metrics.

Cowie JM, Gurney ME.

JMIR Res Protoc. 2018 Jan 24;7(1):e20. doi: 10.2196/resprot.7918.


Motor Function Test Reliability During the NeuroNEXT Spinal Muscular Atrophy Infant Biomarker Study.

Krosschell KJ, Bosch M, Nelson L, Duong T, Lowes LP, Alfano LN, Benjamin D, Carry TB, Devine G, Kelley C, Gadekan R, Malkus EC, Pasternak A, Provance-Orr S, Roemeiser-Logan L, Nicorici A, Trussell D, Young SD, Fetterman JR, Montes J, Powers PJ, Quinones R, Quigley J, Coffey CS, Yankey JW, Bartlett A, Kissel JT, Kolb SJ; NeuroNEXT Clinical Trial Network and on behalf of the NN101 SMA Biomarker Investigators.

J Neuromuscul Dis. 2018;5(4):509-521. doi: 10.3233/JND-180327.


A Comparison of Recruitment Methods for an mHealth Intervention Targeting Mothers: Lessons from the Growing Healthy Program.

Laws RA, Litterbach EK, Denney-Wilson EA, Russell CG, Taki S, Ong KL, Elliott RM, Lymer SJ, Campbell KJ.

J Med Internet Res. 2016 Sep 15;18(9):e248. doi: 10.2196/jmir.5691.


Monitoring Twitter Conversations for Targeted Recruitment in Cancer Trials in Los Angeles County: Protocol for a Mixed-Methods Pilot Study.

Reuter K, Angyan P, Le N, MacLennan A, Cole S, Bluthenthal RN, Lane CJ, El-Khoueiry AB, Buchanan TA.

JMIR Res Protoc. 2018 Sep 25;7(9):e177. doi: 10.2196/resprot.9762.


Recruitment and retention of participants for an international type 1 diabetes prevention trial: a coordinators' perspective.

Franciscus M, Nucci A, Bradley B, Suomalainen H, Greenberg E, Laforte D, Kleemola P, Hyytinen M, Salonen M, Martin MJ, Catte D, Catteau J; TRIGR Investigators.

Clin Trials. 2014 Apr;11(2):150-8. doi: 10.1177/1740774513510070. Epub 2013 Nov 11.


Muscle strength and motor function throughout life in a cross-sectional cohort of 180 patients with spinal muscular atrophy types 1c-4.

Wadman RI, Wijngaarde CA, Stam M, Bartels B, Otto LAM, Lemmink HH, Schoenmakers MAGC, Cuppen I, van den Berg LH, van der Pol WL.

Eur J Neurol. 2018 Mar;25(3):512-518. doi: 10.1111/ene.13534. Epub 2018 Feb 2.


An initiative using informatics to facilitate clinical research planning and recruitment in the VA health care system.

Velarde KE, Romesser JM, Johnson MR, Clegg DO, Efimova O, Oostema SJ, Scehnet JS, DuVall SL, Huang GD.

Contemp Clin Trials Commun. 2018 Jul 10;11:107-112. doi: 10.1016/j.conctc.2018.07.001. eCollection 2018 Sep.


Identifying the participant characteristics that predict recruitment and retention of participants to randomised controlled trials involving children: a systematic review.

Robinson L, Adair P, Coffey M, Harris R, Burnside G.

Trials. 2016 Jun 22;17(1):294. doi: 10.1186/s13063-016-1415-0. Review.


Prospective and longitudinal natural history study of patients with Type 2 and 3 spinal muscular atrophy: Baseline data NatHis-SMA study.

Chabanon A, Seferian AM, Daron A, Péréon Y, Cances C, Vuillerot C, De Waele L, Cuisset JM, Laugel V, Schara U, Gidaro T, Gilabert S, Hogrel JY, Baudin PY, Carlier P, Fournier E, Lowes LP, Hellbach N, Seabrook T, Toledano E, Annoussamy M, Servais L; NatHis-SMA study group.

PLoS One. 2018 Jul 26;13(7):e0201004. doi: 10.1371/journal.pone.0201004. eCollection 2018.


A phase 1 trial of riluzole in spinal muscular atrophy.

Russman BS, Iannaccone ST, Samaha FJ.

Arch Neurol. 2003 Nov;60(11):1601-3.


Recruitment and retention strategies for minority or poor clinical research participants: lessons from the Healthy Aging in Neighborhoods of Diversity across the Life Span study.

Ejiogu N, Norbeck JH, Mason MA, Cromwell BC, Zonderman AB, Evans MK.

Gerontologist. 2011 Jun;51 Suppl 1:S33-45. doi: 10.1093/geront/gnr027.


Experiences in conducting multiple community-based HIV prevention trials among women in KwaZulu-Natal, South Africa.

Ramjee G, Coumi N, Dladla-Qwabe N, Ganesh S, Gappoo S, Govinden R, Guddera V, Maharaj R, Moodley J, Morar N, Naidoo S, Palanee T.

AIDS Res Ther. 2010 Apr 23;7:10. doi: 10.1186/1742-6405-7-10.


A novel use of a statewide telecolposcopy network for recruitment of participants in a Phase I clinical trial of a human papillomavirus therapeutic vaccine.

Stratton SL, Spencer HJ, Greenfield WW, Low G, Hitt WC, Quick CM, Jeffus SK, Blackmon V, Nakagawa M.

Clin Trials. 2015 Jun;12(3):199-204. doi: 10.1177/1740774514566333. Epub 2015 Jan 9.


Recruitment and retention of homeless individuals with mental illness in a housing first intervention study.

Strehlau V, Torchalla I, Patterson M, Moniruzzaman A, Laing A, Addorisio S, Frankish J, Krausz M, Somers J.

Contemp Clin Trials Commun. 2017 May 5;7:48-56. doi: 10.1016/j.conctc.2017.05.001. eCollection 2017 Sep.


A Social Media Peer Group Intervention for Mothers to Prevent Obesity and Promote Healthy Growth from Infancy: Development and Pilot Trial.

Gruver RS, Bishop-Gilyard CT, Lieberman A, Gerdes M, Virudachalam S, Suh AW, Kalra GK, Magge SN, Shults J, Schreiner MS, Power TJ, Berkowitz RI, Fiks AG.

JMIR Res Protoc. 2016 Aug 2;5(3):e159. doi: 10.2196/resprot.5276.


Drug treatment for spinal muscular atrophy types II and III.

Wadman RI, Bosboom WM, van den Berg LH, Wokke JH, Iannaccone ST, Vrancken AF.

Cochrane Database Syst Rev. 2011 Dec 7;(12):CD006282. doi: 10.1002/14651858.CD006282.pub3. Review. Update in: Cochrane Database Syst Rev. 2012;4:CD006282.


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