Literature DB >> 20446890

Modifiable barriers to enrollment in American ALS research studies.

Richard S Bedlack1, Paul Wicks, James Heywood, Edward Kasarskis.   

Abstract

Enrollment in ALS research studies is surprisingly low. Here we report on two online patient surveys that help identify some of the reasons. These include failure to invite patients to enroll, especially patients who have already participated in prior studies. Also included are patient concerns about the cost of participation, and confusion about several aspects of studies being offered. Along with prior work, these data suggest specific steps that can be taken to improve enrollment.

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Year:  2010        PMID： 20446890     DOI： 10.3109/17482968.2010.484494

Source DB:  PubMed          Journal:  Amyotroph Lateral Scler        ISSN： 1471-180X


  6 in total

1.  ALS Multicenter Cohort Study of Oxidative Stress (ALS COSMOS): study methodology, recruitment, and baseline demographic and disease characteristics.

Authors:  Hiroshi Mitsumoto; Pam Factor-Litvak; Howard Andrews; Raymond R Goetz; Leslie Andrews; Judith G Rabkin; Martin McElhiney; Jeri Nieves; Regina M Santella; Jennifer Murphy; Jonathan Hupf; Jess Singleton; David Merle; Mary Kilty; Daragh Heitzman; Richard S Bedlack; Robert G Miller; Jonathan S Katz; Dallas Forshew; Richard J Barohn; Eric J Sorenson; Bjorn Oskarsson; J Americo M Fernandes Filho; Edward J Kasarskis; Catherine Lomen-Hoerth; Tahseen Mozaffar; Yvonne D Rollins; Sharon P Nations; Andrea J Swenson; Jeremy M Shefner; Jinsy A Andrews; Boguslawa A Koczon-Jaremko
Journal:  Amyotroph Lateral Scler Frontotemporal Degener       Date:  2014-02-24       Impact factor: 4.092

2.  The internet for self-diagnosis and prognostication in ALS.

Authors:  Zhongbo Chen; Martin R Turner
Journal:  Amyotroph Lateral Scler       Date:  2010-09-19

3.  Seven-Year Experience From the National Institute of Neurological Disorders and Stroke-Supported Network for Excellence in Neuroscience Clinical Trials.

Authors:  Merit Cudkowicz; Marianne K Chase; Christopher S Coffey; Dixie J Ecklund; Brenda J Thornell; Codrin Lungu; Katy Mahoney; Laurie Gutmann; Jeremy M Shefner; Kevin J Staley; Michael Bosch; Eric Foster; Jeffrey D Long; Emine O Bayman; James Torner; Jon Yankey; Richard Peters; Trevis Huff; Robin A Conwit; Shlomo Shinnar; Donna Patch; Basil T Darras; Audrey Ellis; Roger J Packer; Karen S Marder; Claudia A Chiriboga; Claire Henchcliffe; Joyce Ann Moran; Blagovest Nikolov; Stewart A Factor; Carole Seeley; Steven M Greenberg; Anthony A Amato; Sara DeGregorio; Tanya Simuni; Tina Ward; John T Kissel; Stephen J Kolb; Amy Bartlett; Joseph F Quinn; Kellie Keith; Steven R Levine; Nadege Gilles; Patricia K Coyle; Jessica Lamb; Gil I Wolfe; Annemarie Crumlish; Luis Mejico; Muhammad Maaz Iqbal; James D Bowen; Caryl Tongco; Louis B Nabors; Khurram Bashir; Melanie Benge; Craig M McDonald; Erik K Henricson; Björn Oskarsson; Bruce H Dobkin; Catherine Canamar; Tracy A Glauser; Daniel Woo; Angela Molloy; Peggy Clark; Timothy L Vollmer; Alexander J Stein; Richard J Barohn; Mazen M Dimachkie; Jean-Baptiste Le Pichon; Michael G Benatar; Julie Steele; Lawrence Wechsler; Paula R Clemens; Christine Amity; Robert G Holloway; Christine Annis; Mark P Goldberg; Mariam Andersen; Susan T Iannaccone; A Gordon Smith; J Robinson Singleton; Mariana Doudova; E Clarke Haley; Mark S Quigg; Stephanie Lowenhaupt; Beth A Malow; Karen Adkins; David B Clifford; Mengesha A Teshome; Noreen Connolly
Journal:  JAMA Neurol       Date:  2020-06-01       Impact factor: 18.302

4.  Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem.

Authors:  Melanie Swan
Journal:  J Med Internet Res       Date:  2012-03-07       Impact factor: 5.428

5.  Clinical trials from the patient perspective: survey in an online patient community.

Authors:  Pronabesh DasMahapatra; Priya Raja; Jeremy Gilbert; Paul Wicks
Journal:  BMC Health Serv Res       Date:  2017-02-27       Impact factor: 2.655

6.  Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry's Research Notification Mechanism.

Authors:  Paul Mehta; Jaime Raymond; Moon Kwon Han; Theodore Larson; James D Berry; Sabrina Paganoni; Hiroshi Mitsumoto; Richard Stanley Bedlack; D Kevin Horton
Journal:  J Med Internet Res       Date:  2021-12-07       Impact factor: 5.428
  6 in total

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