Literature DB >> 24005339

Analysis of start-up, retention, and adherence in ALS clinical trials.

Nazem Atassi1, Padmaja Yerramilli-Rao, Jackie Szymonifka, Hong Yu, Marianne Kearney, Daniela Grasso, Jing Deng, Mark Levine-Weinberg, Jordan Shapiro, Alexandra Lee, Lucia Joseph, Eric A Macklin, Merit E Cudkowicz.   

Abstract

OBJECTIVE: To investigate predictors of trial start-up times, high attrition, and poor protocol adherence in amyotrophic lateral sclerosis (ALS) trials.
METHODS: Retrospective analysis of start-up times, retention, and protocol adherence was performed on 5 clinical studies conducted by the Northeast ALS Consortium and 50 ALS clinical trials identified by PubMed search. Predictors of start-up times were estimated by accelerated failure time models with random effects. Predictors of retention and protocol deviations were estimated by mixed-model logistic regression.
RESULTS: Median times for contract execution and institutional review board (IRB) approval were 105 days and 125 days, respectively. Contract execution was faster at sites with more ongoing trials (p = 0.005), and more full-time (p = 0.006) and experienced (p < 0.001) coordinators. IRB approval was faster at sites with more ongoing trials (p = 0.010) and larger ALS clinics (p = 0.038). Site activation after IRB approval was faster at sites with more full-time (p = 0.038) and experienced (p < 0.001) coordinators. Twenty-two percent of surviving participants withdrew before completing the trial. Better participant functional score at baseline was an independent predictor of trial completion (odds ratio 1.29, p = 0.002) and fewer protocol deviations (odds ratio 0.86, p = 0.030).
CONCLUSION: Delays in IRB review contribute the most to prolonged trial start-up times, and these timelines are faster in sites with more experienced staff. Strategies to improve protocol adherence and participants' retention may include enrolling people at early disease stages.

Entities:  

Mesh:

Year:  2013        PMID: 24005339      PMCID: PMC3806927          DOI: 10.1212/WNL.0b013e3182a823e0

Source DB:  PubMed          Journal:  Neurology        ISSN: 0028-3878            Impact factor:   9.910


  26 in total

1.  Processes to activate phase III clinical trials in a Cooperative Oncology Group: the Case of Cancer and Leukemia Group B.

Authors:  David M Dilts; Alan B Sandler; Matthew Baker; Steven K Cheng; Stephen L George; Kathleen S Karas; Stephen McGuire; Gourija S Menon; Jason Reusch; Debbie Sawyer; Maren Scoggins; Amy Wu; Kai Zhou; Richard L Schilsky
Journal:  J Clin Oncol       Date:  2006-10-01       Impact factor: 44.544

2.  Development of clinical trials in a cooperative group setting: the eastern cooperative oncology group.

Authors:  David M Dilts; Alan Sandler; Steven Cheng; Joshua Crites; Lori Ferranti; Amy Wu; Robert Gray; Jean MacDonald; Donna Marinucci; Robert Comis
Journal:  Clin Cancer Res       Date:  2008-06-01       Impact factor: 12.531

3.  Understanding recruitment and retention in neurological research.

Authors:  Alyssa Newberry; Paula Sherwood; Allison Hricik; Sarah Bradley; Jean Kuo; Elizabeth Crago; Leslie A Hoffman; Barbara A Given
Journal:  J Neurosci Nurs       Date:  2010-02       Impact factor: 1.230

4.  The effects of dexpramipexole (KNS-760704) in individuals with amyotrophic lateral sclerosis.

Authors:  Merit Cudkowicz; Michael E Bozik; Evan W Ingersoll; Robert Miller; Hiroshi Mitsumoto; Jeremy Shefner; Dan H Moore; David Schoenfeld; James L Mather; Donald Archibald; Mary Sullivan; Craig Amburgey; Juliet Moritz; Valentin K Gribkoff
Journal:  Nat Med       Date:  2011-11-20       Impact factor: 53.440

5.  Introduction to sample size determination and power analysis for clinical trials.

Authors:  J M Lachin
Journal:  Control Clin Trials       Date:  1981-06

6.  Invisible barriers to clinical trials: the impact of structural, infrastructural, and procedural barriers to opening oncology clinical trials.

Authors:  David M Dilts; Alan B Sandler
Journal:  J Clin Oncol       Date:  2006-10-01       Impact factor: 44.544

Review 7.  Low patient enrollment sites in multicenter randomized clinical trials of cerebrovascular diseases: associated factors and impact on trial outcomes.

Authors:  Adnan I Qureshi; Nauman Tariq; Gabriela Vazquez; Jill Novitzke; M Fareed K Suri; Kamakshi Lakshminarayan; Stephen J Haines
Journal:  J Stroke Cerebrovasc Dis       Date:  2010-08-17       Impact factor: 2.136

8.  Costs and benefits of the national cancer institute central institutional review board.

Authors:  Todd H Wagner; Christine Murray; Jacquelyn Goldberg; Jeanne M Adler; Jeffrey Abrams
Journal:  J Clin Oncol       Date:  2009-10-19       Impact factor: 44.544

9.  Challenges of recruitment and retention in multisite clinical research.

Authors:  Mary E Cooley; Linda Sarna; Jean K Brown; Roma D Williams; Cynthia Chernecky; Geraldine Padilla; Leda Layo Danao
Journal:  Cancer Nurs       Date:  2003-10       Impact factor: 2.592

10.  Failure to report protocol violations in clinical trials: a threat to internal validity?

Authors:  Elizabeth A Sweetman; Gordon S Doig
Journal:  Trials       Date:  2011-09-28       Impact factor: 2.279

View more
  17 in total

1.  Behavioral and Social Sciences at the National Institutes of Health: adoption of research findings in health research and practice as a scientific priority.

Authors:  William T Riley
Journal:  Transl Behav Med       Date:  2017-06       Impact factor: 3.046

2.  Characteristics of participants consenting versus declining follow-up for up to 10 years in a randomized clinical trial.

Authors:  Alice J Sheffet; Jenifer H Voeks; Ariane Mackey; William Brooks; Wayne M Clark; Michael D Hill; Virginia J Howard; Susan E Hughes; MeeLee Tom; Mary E Longbottom; Thomas G Brott
Journal:  Clin Trials       Date:  2015-06-29       Impact factor: 2.486

3.  Outcome measures in amyotrophic lateral sclerosis clinical trials.

Authors:  Sabrina Paganoni; Merit Cudkowicz; James D Berry
Journal:  Clin Investig (Lond)       Date:  2014

4.  Home-Based Music Therapy to Support Bulbar and Respiratory Functions of Persons with Early and Mid-Stage Amyotrophic Lateral Sclerosis-Protocol and Results from a Feasibility Study.

Authors:  Alisa T Apreleva Kolomeytseva; Lev Brylev; Marziye Eshghi; Zhanna Bottaeva; Jufen Zhang; Jörg C Fachner; Alexander J Street
Journal:  Brain Sci       Date:  2022-04-13

5.  ALS longitudinal studies with frequent data collection at home: study design and baseline data.

Authors:  Seward B Rutkove; Kristin Qi; Kerisa Shelton; Julie Liss; Visar Berisha; Jeremy M Shefner
Journal:  Amyotroph Lateral Scler Frontotemporal Degener       Date:  2018-11-28       Impact factor: 4.092

Review 6.  Comprehensive rehabilitative care across the spectrum of amyotrophic lateral sclerosis.

Authors:  Sabrina Paganoni; Chafic Karam; Nanette Joyce; Richard Bedlack; Gregory T Carter
Journal:  NeuroRehabilitation       Date:  2015       Impact factor: 2.138

7.  Analysis of Participant Withdrawal in Huntington Disease Clinical Trials.

Authors:  Haruhiko Banno; Kelly L Andrzejewski; Michael P McDermott; Alyssa Murphy; Madhurima Majumder; Elisabeth A de Blieck; Peggy Auinger; Merit E Cudkowicz; Nazem Atassi
Journal:  J Huntingtons Dis       Date:  2017

Review 8.  The Impact of Cognitive and Behavioral Symptoms on ALS Patients and Their Caregivers.

Authors:  Jashelle Caga; Sharpley Hsieh; Patricia Lillo; Kaitlin Dudley; Eneida Mioshi
Journal:  Front Neurol       Date:  2019-03-11       Impact factor: 4.003

9.  Drivers of Start-Up Delays in Global Randomized Clinical Trials.

Authors:  Jennifer Lai; Leila Forney; Daniel L Brinton; Kit N Simpson
Journal:  Ther Innov Regul Sci       Date:  2020-09-21       Impact factor: 1.778

10.  Trial of Sodium Phenylbutyrate-Taurursodiol for Amyotrophic Lateral Sclerosis.

Authors:  Sabrina Paganoni; Eric A Macklin; Suzanne Hendrix; James D Berry; Michael A Elliott; Samuel Maiser; Chafic Karam; James B Caress; Margaret A Owegi; Adam Quick; James Wymer; Stephen A Goutman; Daragh Heitzman; Terry Heiman-Patterson; Carlayne E Jackson; Colin Quinn; Jeffrey D Rothstein; Edward J Kasarskis; Jonathan Katz; Liberty Jenkins; Shafeeq Ladha; Timothy M Miller; Stephen N Scelsa; Tuan H Vu; Christina N Fournier; Jonathan D Glass; Kristin M Johnson; Andrea Swenson; Namita A Goyal; Gary L Pattee; Patricia L Andres; Suma Babu; Marianne Chase; Derek Dagostino; Samuel P Dickson; Noel Ellison; Meghan Hall; Kent Hendrix; Gale Kittle; Michelle McGovern; Joseph Ostrow; Lindsay Pothier; Rebecca Randall; Jeremy M Shefner; Alexander V Sherman; Eric Tustison; Prasha Vigneswaran; Jason Walker; Hong Yu; James Chan; Janet Wittes; Joshua Cohen; Justin Klee; Kent Leslie; Rudolph E Tanzi; Walter Gilbert; Patrick D Yeramian; David Schoenfeld; Merit E Cudkowicz
Journal:  N Engl J Med       Date:  2020-09-03       Impact factor: 176.079

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.