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Independent Scientific Advisory Committee (ISAC)

The scientific direction and progress of the InSPiRe project will be overseen by an Independent Scientific Advisory Committee. This comprises international clinical and non-clinical experts and patient group representatives. Members are selected for their expertise and ability to provide project oversight and represent key stakeholders in the project deliverables.



  • To oversee the direction and progress of the InSPiRe project, specifically providing expert advice on key project decisions
  • To provide expert guidance on the relevance of the project work to key stakeholders including patients and the public
  • To comment on the quality of project deliverables and the overall scientific work of the project
  • To advise, and if appropriate assist with, dissemination and exploitation of project results


  • Stephen Groft (Office of Rare Diseases Research, NIH)
  • Rob Hemmings (Statistics Unit, MHRA)
  • Ralf Herold (Paediatric Medicines, EMA)
  • Gerard Nguyen Duc Long (Hopital Avicenne APHP and Rett Syndrome Europe)
  • Gerard Pons (Professor of Clinical Pharmacology, INSERM)
  • Kit Roes (Professor of Biostatistics, Utrecht, Co-ordinator ASTERIX project)
  • Tsveta Schyns (EURORDIS)
  • Nigel Stallard (InSPiRe project co-ordinator)

Additional members may be invited as required.

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