The natural history of ALS: Baseline characteristics from a multicenter clinical cohort.
Alex BergerMatteo LocatelliXimena Arcila-LondonoGhazala HayatNicholas OlneyJames P WymerKelly G GwathmeyChristian LunettaTerry D Heiman-PattersonSenda Ajroud-DrissEric A MacklinMarie-Abele C BindKimberly GoslinTamela StuchinerLauren BrownTracy BazanTyler ReganAshley AdamoValerie FermentCarly SchroederMegan SomersGeorgios E ManousakisKenneth FaulconerErvin SinaniJulia MirochnickHong YuAlexander V ShermanDavid Walknull nullPublished in: Amyotrophic lateral sclerosis & frontotemporal degeneration (2023)
A clinic-based longitudinal dataset can improve our understanding of the natural history of ALS and can be used to inform the design and analysis of clinical trials and health economics studies, to help the prediction of clinical course, to find matched controls for open label extension trials and expanded access protocols, and to document real-world evidence of the impact of novel treatments and changes in care practice.
Keyphrases
- healthcare
- clinical trial
- open label
- amyotrophic lateral sclerosis
- primary care
- phase ii
- quality improvement
- cross sectional
- public health
- double blind
- phase iii
- palliative care
- mental health
- phase ii study
- study protocol
- health information
- case control
- pain management
- randomized controlled trial
- radiation therapy
- squamous cell carcinoma
- affordable care act