profile picture of Innovative Drug Development Initiative (IDDI)

Innovative Drug Development Initiative (IDDI)

Task force leaders

Raymond Benza, United States

Mark Toshner, United Kingdom

Sylvia Nikkho, Germany

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 pulmonary hypertension patients.

IDDI’s 5 Year Plan

  • 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 re-purposing drugs opportunities for different forms of pulmonary hypertension (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 pulmonary hypertension patients.
  • Include the view of patients, regulators and nurses, and their advocacy groups.

IDDI’s 10 Year Aspirations

  • To be recognised as a centre of excellence for free, in-depth scientific exchange of information and its timely utilisation in the field of pulmonary vascular diseases.
  • Driving the finding of innovative treatments, and potentially a cure for pulmonary hypertension 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 pulmonary hypertension.

Key Initiatives – IDDI 2019 Meetings, Barcelona & 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 an existing PVRI member. To Join PVRI, click the link where you will find our membership application form.

The work done by the Pulmonary Vascular Research Institute’s various Task Forces is vital and represents a global healthcare initiative. Like everything done at the PVRI, the fight against pulmonary hypertension and other pulmonary vascular disease is a team effort, so why not join the team?

Further information

2017 Annual Report

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

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