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MetabERN Survey – Patients’ Perspective of Clinical Trials

MetabERN Survey – Patients’ Perspective of Clinical Trials
EventsPast Event

MetabERN is a network of 69 medical centres specialised in rare metabolic diseases located in 18 European Member States. The network associates health care providers and patient organisations. One of the missions of the network is to behave like an observatory of medical cares, patient’s perceptions, and research in the field of inherited metabolic diseases.

The MetabERN centres frequently organize and/or participate to clinical trials with the aim to learn more about diseases, patients and families, care practices, and to find new treatments.

To improve the realisation of clinical trials within the network, and adequately adapt the protocols to patients’ expectations, MetabERN wishes to learn about your perception of clinical trials. This is why we kindly ask you to answer the questionnaire below carefully. It contains between 34-41 questions and needs roughly 16 minutes for completion.

The MetabERN central office will analyse your answers. The results will be communicated to all participants, to health care providers in the network, and if conclusive enough, they will be posted on the MetabERN web site and shared with other ERN teams and policy officers of the European Commission (DG Santé).

Original Signed Letter
Survey Link

Thank you for your cooperation and inputs.

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Last News & Events

  • DCTEP learners’ stories: How does an e-learning on IMDs really look like?
  • Conference on Rare diseases and European reference networks in Bilbao
  • Swedish SLOS Conference – October 2, 2023
  • Brain Metabolism Workshop – 6-7 July 2023
  • “Genetic therapies” course in Heidelberg – 22-24 June
  • Liver Transplant for Inborn Errors of Metabolism – Sharing Knowledge Across ERNs
  • 6th World Conference on CDG – 21-23 July 2023
  • Gyrate Atrophy of the Choroid and Retina – International hybrid symposium

Activities

  • Publications and Guidelines
  • Unified Registry for Inherited Metabolic Disorders
  • Projects

Disclaimer

MetabERN is a European Reference Network (ERN) approved by the ERN Board of Member States.
The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern
The content on this website represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

For more information please contact
Prof. Maurizio Scarpa, MD, PhD
MetabERN Coordinator

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