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International Alliance of ALS/MND Associations

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Open Science

The Open Science Statement of the International Alliance of ALS/MND Associations consists of Values, Principles and Practices as shown in the chart below. The practices are outlined in more detail following the chart.  Our expectation is that any Alliance research collaborators must commit to making their outputs (materials and knowledge) publicly available without restriction on use and adhere to the following values, principles and practices, which support the values of the International Alliance of ALS MND Associations with respect to Open Science.

Values, Principles and Practices

Values Principles Practices
Human-centric
  • Fairness
  • Representative
  • Respectful
  • Inclusive
  • Communications
  • Behaviours
  • PALS/CALS driven
  • Accountability
  • IP
  • Auditable
Knowledge-sharing
  • Urgency
  • Timely
  • Transparency
  • Article access
  • Interoperable
  • Data & code access
  • Replicable & reproducible
  • Protocols
Trustworthy
  • Reliability
  • Accessible documentation
  • Private & secure
  • Compliance processes & guidelines
  • Follow-on research
  • Re-use
  • Attribution & acknowledgement

Practices

  1. Each researcher or project will have a plan for how the principles of Open Science will be adhered to from inception to the end of the project. That plan will include how the values of human centric, the knowledge sharing, and the trustworthiness will be met.
  2. Where possible, existing human data will be used so PALS and CALS do not have to undergo repeat testing if they have made informed consent to make their data available under open science principles.
  3. 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. Researchers will not, under any Alliance Project they undertake (internal or collaborative), 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 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 still maintaining compliance with any privacy and confidentiality regulations.
  8. Any data, code, and software needed for independent verification of research results must be curated and made free and publicly available in an established, open repository no later than the publication of the first paper based on the data, or no later than the expiration of the grant, whichever comes first.
  9. Research outputs (articles, data, code, and software) resulting from funding must be made available with generous reuse & remixing rights (e.g. CC BY.CCO licences)
  10. Applicants will be encouraged to include the anticipated costs for 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 and there will be compliance checkpoints throughout the term of engagement which proactively compiles proof of policy compliance as a component of interim and final reports

Primary Sidebar

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Jack Buzby, USA

    Jack Buzby, USA

  • Marcel R. Wernard, Diagnosed 2016 - ALS Patients Connected, The Netherlands

    Marcel R. Wernard, Diagnosed 2016 – ALS Patients Connected, The Netherlands

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Ian Roberts

    Ian Roberts

  • Fabio Correia

    Fabio Correia

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Ann Nicol

    Ann Nicol

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Cath Muir

    Cath Muir
    Cath

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Roy

    Roy
    roy

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • David Bishop

    David Bishop

  • Daniel Hare

    Daniel Hare

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

Learn more about the March of Faces

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