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Innovative Drug Development Initiative (IDDI)

Task force leaders

Sylvia Nikkho, Germany

Peter Fernandes, United States

Paul Corris, United Kingdom

Type of task force

Disease & Speciality

To create an organisation where scientific, clinical and regulatory information and ideas can be openly shared, discussed and harmonised between pharma, academia and regulators worldwide to help bring promising new orphan drugs, early to this critical group of rare disease PH patients.

Our priorities for the next 3 to 5 years are to:

  • Create and facilitate a platform to allow discussion and harmonisation of ideas between Pharma, Academia and Regulators to build awareness on the disease and explore options to early diagnosis and treatment.
  • Explore innovative and suitable clinical trial designs, endpoints, biomarkers and repurposing drugs opportunities for different forms of PH.
  • Leverage deep phenotyping programmes at PH specialised centres to inform and enrich new clinical trial designs based on patient subsets (“Personalised Medicine”).
  • Explore acceleration potential of clinical trials to bring novel orphan drugs as soon as possible to this critically ill group of PH patient.
  • Include the view of patients, regulators and nurses, and their advocacy groups.

Our aspirations are that, in 10 years from today, the IDDI is recognised as:

  • The centre of excellence for free, in-depth scientific exchange of information and its timely utilisation.
  • Driving the finding of innovative treatments, and potentially a cure for PH and other PH related rare diseases.
  • Successfully harmonising and developing protocol designs, biomarkers and endpoints to expedite availability of critical new treatments and drugs especially those for treating rare diseases.
  • Providing scientific input to guidelines for the optimal diagnosis and treatment of all forms of PH.

Key initiatives for introductory discussion at the IDDI 2019 meetings in Barcelona and Paris

How to get involved

If you would like to join the IDDI and get involved in its work, please download and complete our Get Involved form and email it back to: Please note you will need to be a PVRI member. 

Further information

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Through worldwide collaboration, we can begin to answer the question of a global disease.

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