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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

  • Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

    Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Christian Bär, Germany

    Christian Bär, Germany

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Andrietta

    Andrietta

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

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

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Ann Nicol

    Ann Nicol

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

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

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Willi Klein

    Willi Klein

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • IMG_2658

    IMG_2658

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Fabio Carvalho

    Fabio Carvalho

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

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

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

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Ian Roberts

    Ian Roberts

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Roy

    Roy
    roy

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

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

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

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