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Evaluation of the EU Orphan Regulation

EU Orphan Regulation - Survey for academic researchers and experts

You are invited to participate in this survey as a key stakeholder in a study supporting the evaluation of Regulation (EC) N° 141/2000 on orphan medicinal products (henceforth the EU Orphan Regulation) for the European Commission (DG SANTE).

The European Commission has commissioned Technopolis Group and Ecorys BV to collect data to better understand the perspectives of stakeholders on the efficiency, effectiveness, relevance, and EU added value of the EU Orphan Regulation as well as its coherence with other regulations. The study is expected to be completed in the first half of 2019.

The current survey is intended for (academic) researchers and experts with an interest in:

  • genetics and pathophysiology of rare diseases
  • development of medicinal products for the treatment of rare diseases
  • pharmaco-economics and value assessment of orphan medicinal products
  • pharmaceutical policy relating to orphan medicinal products

If you are, or represent, a sponsor of a product that has received an orphan designation under the EU Orphan Regulation, you may instead complete this version of the survey.

If you are a physician treating patients with rare diseases, you are invited to participate in the Open Public Consultation to this study, which is available here.

We anticipate that completing this survey will not take more than 45-60 minutes of your time. In case you need to quit the survey before completion, it is possible to save answers and complete the survey later. Please complete the survey before the 3rd of December 2018.

If you wish to view the survey before completing it, please go here. Please note that this version contains some routing, therefore not all questions will be applicable to you.

Should you experience any problems with this survey, please contact Technopolis Group at orphan-regulation[at] If you would like to share a document or position paper that could be relevant for the study please send it to the email indicated above.

Thank you for your participation!

Privacy Note

The European Commission is the data controller and Technopolis Group is the data processor in administering this survey. Both organisations are committed to user privacy and confidentiality, guided by the Regulation (EC) No 45/2001 regarding processing personal data by the Community institutions.

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