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International Alliance of ALS/MND Associations

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  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
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      • Amylyx – AMX0035
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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

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

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

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Tison, USA

    Tison, USA

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • unnamed

    unnamed

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Brian Parsons

    Brian Parsons

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Art Eggert, USA

    Art Eggert, USA

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • David Bishop

    David Bishop

  • Christian Bär, Germany

    Christian Bär, Germany

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