PRO-ACT logo RegisterLog in Neurological Clinical Research Institute
Welcome to the
Pooled Resource Open-Access ALS Clinical Trials Database
Citation/Attribution Guidelines

Upon requesting access to the PRO-ACT database, you agreed to the Terms and Conditions of Use including the citation and attribution guidelines for publications and presentations utilizing the PRO-ACT data, as below:

If I publish an abstract using data from the PRO-ACT Database, I agree to the following:
  1. I will cite the PRO-ACT Database as the source of the data.
  2. The PRO-ACT Consortium will not be cited in the authorship line of the abstract unless first agreed to in writing by a representative of the PRO-ACT Consortium.
If I publish a manuscript using data from the PRO-ACT Database, I agree to the following:
  1. On the author line of the manuscript, after the named authors, I will include the phrase "the Pooled Resource Open-Access ALS Clinical Trials Consortium*" with the asterisk referring to the following statement and list of names:

    *Data used in the preparation of this article were obtained from the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) Database. As such, the following organizations and individuals within the PRO-ACT Consortium contributed to the design and implementation of the PRO-ACT Database and/or provided data, but did not participate in the analysis of the data or the writing of this report:

    • ALS Therapy Alliance
    • Cytokinetics, Inc.
    • Amylyx Pharmaceuticals, Inc.
    • Knopp Biosciences
    • Neuraltus Pharmaceuticals, Inc.
    • Neurological Clinical Research Institute, MGH
    • Northeast ALS Consortium
    • Novartis
    • Prize4Life Israel
    • Regeneron Pharmaceuticals, Inc.
    • Sanofi
    • Teva Pharmaceutical Industries, Ltd.
    • The ALS Association

  2. I will include language similar to the following in the methods section of my manuscripts to accurately acknowledge data collection by the PRO-ACT Consortium. Depending upon the length and focus of the article, it may be appropriate to include more or less than the example below; however, inclusion of some variation of the language shown below is mandatory.

    "Data used in the preparation of this article were obtained from the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) Database. The data available in the PRO-ACT Database have been volunteered by PRO-ACT Consortium members."

  3. I will submit all manuscripts to the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (mghproact at mgb dot org) prior to submitting them to a journal. NCRI will review the author list and materials and methods to ensure compliance with articles 10 and 11 of these terms and conditions. NCRI will maintain confidentiality of the manuscript and will complete its review within 3 business days of receipt.
If I make a public announcement using data from the PRO-ACT Database, I will include the following paragraph:

"PRO-ACT Dataset is the world’s largest ALS clinical trial data repository, compiling placebo and treatment-arm data from 29 phase II/III clinical trials and 11,675 fully anonymized longitudinal Subject records funded by The ALS Therapy Alliance, Prize4Life, Inc., Northeast ALS Consortium (NEALS), Neurological Clinical Research Institute of Mass. General Hospital, ALS Finding A Cure, and The ALS Association. Neurological Clinical Research Institute of Mass. General Hospital created and maintained the PRO-ACT Dataset and serves as the coordinating center and data distributor of the PRO-ACT Dataset. Find out more at www.alsdatabase.org"

1/8/2024 9:02:43 PM