Clinical Research Tools and Resources

ALS TDI / Google AI Machine Learning Based Objective Measure for ALS Disease Severity – Incorporates voice recordings, accelerometer data, and self-reported ALSFRS-r scores from people living with ALS enrolled in ALS TDI’s Precision Medicine Program. The code for the machine learning algorithm is available on Github, and a companion preprint manuscript on medRxiv.

ENCALS Outcome Measures – Information and training modules on the standardized core protocols, data sets, and outcome measures used by the European trial network TRICALS.

Rasch-built Overall ALS Disability Scale (ROADS) – Funded by an ALSRP Clinical Development Award (AL200156) to Dr. Christina Fournier at Emory University School of Medicine, the ROADS is a new self-reported ALS disability scale. A JAMA Neurology manuscript details the development and validation of the ROADS. The ROADS Form is available for download, and more information can be requested from the Emory ALS Center.

Platforms to Search for Clinical Trials

ALS Signal – A searchable platform of information on ALS clinical trials around the world, created and maintained by I AM ALS. Efforts to create the platform were led by ALSRP Programmatic Panel Consumer Dr. Nadia Sethi.

Antidote Match

Clinicaltrials.gov – database of privately and publicly funded clinical studies conducted around the world. The NEALS website has useful information regarding navigating ALS-relevant trial information on clinical trials.gov.

Northeast ALS Consortium Clinical Trial Database

National ALS Registry Trial Recruitment Notification System – enables persons with ALS (pALS) enrolled in the Registry to receive automatic notifications about clinical trials for which they may be eligible. Researchers who would like their studies included in the notification system can email alsresearch@cdc.gov. More information here