Literature DB >> 33527843

An old friend who has overstayed their welcome: the ALSFRS-R total score as primary endpoint for ALS clinical trials.

Ruben P A van Eijk1,2, Adriaan D de Jongh1, Stavros Nikolakopoulos2, Christopher J McDermott3, Marinus J C Eijkemans2, Kit C B Roes2,4, Leonard H van den Berg1.   

Abstract

Objective: The ALSFRS-R is limited by multidimensionality, which originates from the summation of various subscales. This prevents a direct comparison between patients with identical total scores. We aim to evaluate how multidimensionality affects the performance of the ALSFRS-R in clinical trials.
Methods: We simulated clinical trial data with different treatment effects for the ALSFRS-R total score and its subscales (i.e. bulbar, fine motor, gross motor and respiratory). We considered scenarios where treatment reduced the rate of ALSFRS-R subscale decline either uniformly (i.e. all subscales respond identically to treatment) or non-uniformly (i.e. subscales respond differently to treatment). Two main analytical strategies were compared: (1) analyzing only the total score or (2) utilizing a subscale-based test (i.e. alternative strategy). For each analytical strategy, we calculated the empirical power and required sample size.
Results: Both strategies are valid when there is no treatment benefit and provide adequate control of type 1 error. If all subscales respond identically to treatment, using the total score is the most powerful approach. As the differences in treatment responses between subscales increase, the more the total score becomes affected. For example, to detect a 40% reduction in the bulbar rate of decline with 80% power, the total score requires 1380 patients, whereas this is 336 when using the alternative strategy. Conclusions: Ignoring the multidimensional structure of the ALSFRS-R total score could have negative consequences for ALS clinical trials. We propose determining treatment benefit on a subscale level, prior to stating whether a treatment is generally effective.

Entities:  

Keywords:  ALSFRS-R; clinical trials; models; multidimensionality; therapy

Mesh:

Year:  2021        PMID: 33527843     DOI: 10.1080/21678421.2021.1879865

Source DB:  PubMed          Journal:  Amyotroph Lateral Scler Frontotemporal Degener        ISSN: 2167-8421            Impact factor:   4.092


  7 in total

1.  Utility of the ALSFRS-R for predicting ALS and comorbid disease neuropathology: The Veterans Affairs Biorepository Brain Bank.

Authors:  Leigh E Colvin; Zachariah W Foster; Thor D Stein; Manisha Thakore-James; Mohammad Kian Salajegheh; Kendall Carr; Keith R Spencer; Nazifa Abdul Rauf; Latease Adams; James G Averill; Sean E Walker; Ian Robey; Victor E Alvarez; Bertrand R Huber; Ann C McKee; Neil W Kowall; Christopher B Brady
Journal:  Muscle Nerve       Date:  2022-06-04       Impact factor: 3.852

2.  Slowing the loss of physical function in amyotrophic lateral sclerosis with edaravone: Post hoc analysis of ALSFRS-R item scores in pivotal study MCI186-19.

Authors:  Benjamin Rix Brooks; Erik P Pioro; Jonathan Katz; Fumihiro Takahashi; Koji Takei; Jeffrey Zhang; Stephen Apple
Journal:  Muscle Nerve       Date:  2021-12-10       Impact factor: 3.852

3.  Composite endpoint for ALS clinical trials based on patient preference: Patient-Ranked Order of Function (PROOF).

Authors:  Ruben P A van Eijk; L H van den Berg; Ying Lu
Journal:  J Neurol Neurosurg Psychiatry       Date:  2021-12-17       Impact factor: 13.654

Review 4.  Recent advances in the diagnosis and prognosis of amyotrophic lateral sclerosis.

Authors:  Stephen A Goutman; Orla Hardiman; Ammar Al-Chalabi; Adriano Chió; Masha G Savelieff; Matthew C Kiernan; Eva L Feldman
Journal:  Lancet Neurol       Date:  2022-03-22       Impact factor: 59.935

Review 5.  Clinical trials in amyotrophic lateral sclerosis: a systematic review and perspective.

Authors:  Charis Wong; Maria Stavrou; Elizabeth Elliott; Jenna M Gregory; Nigel Leigh; Ashwin A Pinto; Timothy L Williams; Jeremy Chataway; Robert Swingler; Mahesh K B Parmar; Nigel Stallard; Christopher J Weir; Richard A Parker; Amina Chaouch; Hisham Hamdalla; John Ealing; George Gorrie; Ian Morrison; Callum Duncan; Peter Connelly; Francisco Javier Carod-Artal; Richard Davenport; Pablo Garcia Reitboeck; Aleksandar Radunovic; Venkataramanan Srinivasan; Jenny Preston; Arpan R Mehta; Danielle Leighton; Stella Glasmacher; Emily Beswick; Jill Williamson; Amy Stenson; Christine Weaver; Judith Newton; Dawn Lyle; Rachel Dakin; Malcolm Macleod; Suvankar Pal; Siddharthan Chandran
Journal:  Brain Commun       Date:  2021-10-23

6.  Exploring the association between outcome measures to guide clinical management in patients with amyotrophic lateral sclerosis.

Authors:  Michelle J Sanfilippo; Mary E Layshock; Leslie Keniston
Journal:  J Phys Ther Sci       Date:  2022-08-03

Review 7.  A systematic review of digital technology to evaluate motor function and disease progression in motor neuron disease.

Authors:  Emily Beswick; Thomas Fawcett; Zack Hassan; Deborah Forbes; Rachel Dakin; Judith Newton; Sharon Abrahams; Alan Carson; Siddharthan Chandran; David Perry; Suvankar Pal
Journal:  J Neurol       Date:  2022-08-09       Impact factor: 6.682

  7 in total

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