MetabERN Survey – Patients’ Perspective of Clinical Trials

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.