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FAQ on Patient Registries

A registry is an organised system in which uniform data are collected for a predefined purpose. Registries of patients and/or healthy volunteers are important for assessing the prevalence and devel...Read more

FAQ on Innovative Medical Therapies

In recent years, innovative therapies have advanced significantly, bringing new hopes and issues to the table. A decade ago they were only an abstract concept. We hope this booklet gives a balanced... Read more >>

FAQ on social and psychological aspects of medical testing

This leaflet aims to provide ideas and guidance for patients and families who are offered diagnostic or predictive medical testing of one sort or another. It builds on the shared experience of pati... Read more >>

FAQ on Clinical Trials (various languages)

This booklet brings together some of the questions that are frequently asked by those thinking about joining a clinical trial Read more >>

FAQ on Personalised Healthcare (various languages)

In one sense, personalised healthcare is nothing new. It is what doctors have aimed to provide for their patients through the exercise of their clinical judgement, backed up by specialist knowledge... Read more >>

FAQ on Biobanks (various languages)

To help promote understanding and to secure informed involvement with the activities of biobanks and the research they make possible, we have assembled a list of questions that have been frequently... Read more >>

Patients Handbook on Stem Cell Therapy

Like a new drug, stem cell therapies must be assessed and meet certain standards before receiving approval from national regulatory bodies to be used to treat people. What does this really mean for... Read more >>

Gene Therapy and Ethics: The Patient View - A tool for patients dialoque

This brochure aims to support dialogue within patients' communities on ethical questions related to gene therapy clinical trials. Read more >>

Gene Therapy and Ethics: The Patient View - A tool for public dialoque

This folder has been created to increase your understanding of the patient perspective on gene therapy and in particular on some of the ethical issues involved. Read more >>

Glossary of terms

Clinical trials are an essential aspect of modern medical research. This glossary brings deļ¬nitions together. Read more >>

Biobanks - the entrepreneurial role of patient organisations

  Report of the EPPOSI Conference DATA- AND BIO-BANKING FOR RESEARCH European Society of Human Genetics (ESHG) ... Read more >>