Historical Trial Data

NEALS maintains and makes available the de-identified data from NEALS-Affiliated trials, when possible. Currently there are six ALS trial datasets available to share with researchers:

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ALS Trial Datasets

  • A Randomized, Placebo-Controlled Trial of Topiramate in Amyotrophic Lateral Sclerosis
  • Trial of Celecoxib in Amyotrophic Lateral Sclerosis
  • A Clinical Trial of Creatine in ALS
  • Tolerance of high-dose coenzyme Q10 in ALS
  • Study to Investigate the Safety and Efficacy of Lithium in Volunteers With Amyotrophic Lateral Sclerosis
  • Clinical Trial Ceftriaxone in Subjects with ALS**

Once the data request is approved by NEALS, the requester will be put in contact with the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH-NCRI) to execute a data use agreement with MGH-NCRI before the data sets are released.

To follow-up regarding an existing approved request, please contact Jennifer Hagar, Senior Grants Administrator, at email hidden; JavaScript is required and Cc email hidden; JavaScript is required.

NEALS Data Sets

To request access to NEALS data sets please fill out a Data Request Form and submit the completed form to:

Tara Lincoln, NEALS Director of Operations, at email hidden; JavaScript is required

NEALS Data Sharing Policy

Type of Data to be Shared: With permission from the sponsor, de-identified data from NEALS clinical trials will be made available to all members and research partners of the Consortium.

**To request access to the data set from the Ceftriaxone study, please complete the NINDS Data Request Form and send it to the NINDS Clinical Research Liaison at email hidden; JavaScript is required

  1. Study Title: Clinical Trial Ceftriaxone in Subjects With Amyotrophic Lateral Sclerosis (ALS)
  2. Principal Investigator: Merit Cudkowicz

PRO-ACT (Pooled Resource Open-access ALS Clinical Trials)

The PRO-ACT (Pooled Resource Open-access ALS Clinical Trials) platform houses the largest ALS clinical trials dataset ever created, with 10,723 ALS patient records from multiple completed clinical trials. Created by the non-profit Prize4Life, the PRO-ACT database was established in partnership with the NEALS Consortium, the Neurological Clinical Research Institute at Mass General Hospital, and with support from the ALS Therapy Alliance. The PRO-ACT initiative merges data from existing publicly and privately conducted ALS clinical trials resulting in an invaluable resource for accelerating discovery in the field of ALS. Access the PRO-ACT platform and further information here.

Data within PRO-ACT was graciously donated by the following organizations:

  • Knopp Biosciences
  • Neuraltus Pharmaceuticals, Inc.
  • Northeast ALS Consortium
  • Novartis
  • Regeneron Pharmaceuticals, Inc
  • Sanofi
  • Teva Pharmaceutical Industries, Ltd