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International Alliance of ALS/MND Associations

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Open Science

The Alliance expects all research collaborators to make their outputs (materials and knowledge) publicly available, without restriction on use, and to follow the values, principles, and practices in this Open Science Statement. They support the Alliance’s own values on open science.

The table below shows how the values, principles, and practices connect. The numbered practices that follow explain each commitment in more detail.

On this page

Values, principles, and practices  │  Open science practices

Values, principles, and practices

Open Science Statement: values, principles, and practices
Values Principles Practices
Human-centric Fairness Representative; respectful
Inclusive Communications; behaviours; driven by people living with ALS/MND and their communities (PALS/CALS)
Accountability Intellectual property (IP); auditable
Knowledge-sharing Urgency Timely
Transparency Article access
Interoperable Data and code access
Replicable and reproducible Protocols
Trustworthy Reliability Accessible documentation
Private and secure Compliance processes and guidelines
Follow-on research Re-use; attribution and acknowledgement

Practices

  1. Each researcher or project will have a plan for how the principles of open science will be followed, from the start of the project to its end. The plan will describe how the values of human-centric, knowledge-sharing, and trustworthy research will be met.
  2. Where possible, existing human data will be used, so that people living with ALS/MND and their communities do not have to undergo repeat testing if they have given informed consent for their data to be made available under open science principles.
  3. Researchers will post experimental protocols to a protocol-sharing service, such as protocols.io.
  4. All articles resulting from funding must be published in a fully open access journal or posted in an open repository with free, immediate readership rights.
  5. Researchers will seek to place open access results arising from research projects (internal or collaborative) in the public domain. In any Alliance project they undertake (internal or collaborative), researchers will not file any form of patent application or allow a collaborator to restrict the research use of open access project outputs.
  6. Data will be shared according to the FAIR principles: Findability, Accessibility, Interoperability, and Reuse of digital assets.
  7. Researchers will promptly release the associated output data through free and publicly accessible digital repositories, while continuing to comply with all applicable privacy and confidentiality regulations.
  8. Any data, code, and software needed for independent verification of research results must be curated and made freely and publicly available in an established, open repository. This must happen no later than the publication of the first paper based on the data or the end of the grant, whichever comes first.
  9. Research outputs (articles, data, code, and software) resulting from funding must be made available with broad reuse and remixing rights (for example, CC BY or CC0 licences).
  10. Applicants will be encouraged to include the anticipated costs of making their work open in their grant applications.
  11. All researchers and projects will include a data-sharing plan as part of the application process. Compliance checkpoints throughout the term of engagement will proactively collect proof of compliance with this policy, as part of interim and final reports.

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  • Ada Garrido Benavidez, Mexico

    Ada Garrido Benavidez, Mexico

  • Mikey Stone, ALS

    Mikey Stone, ALS

  • Wilfried Leusing, Germany

    Wilfried Leusing, Germany

  • Monica Soriano, Argentina

    Monica Soriano, Argentina

Learn more about the March of Faces

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