The VISION-DMD published a white paper on how to return individual clinical trial results back to patients. It focuses on addressing the ethical and technical challenges, using the vamorolone clinical trial experience. The VISION-DMD is a project aimed to advance and...
The Lancet Child Adolescents Health published the article ‘Strengthening children's participation in their health: the new initiative of the Council of Europe’ which was written by the TEDDY Chair, Annagrazia Altavilla, together with its colleagues from DH-BIO and...
The Contemporary Clinical Trials Communications journal has published the article: ‘Paediatric clinical research in Europe: An insight on experts’ needs and perspectives’ which concerns the results of a cross-sectional, closed-ended questionnaire prepared within the...
Last February 11, 2021, the European Forum for Good Clinical Practice (EFGCP) organised the webinar “Paediatric Clinical Trial Preparedness: New Enpr-EMA Guideline”. The European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) has been...
The European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN EuroNMD) together with the European Academy of Neurology (EAN) has organised an educational webinar on Myoclonus dystonia focused on paediatric. Myoclonus dystonia...
The EU is revising the rules on scientific and technological developments regarding blood, tissues, and cells for medical treatments and therapies. On 21 January 2021, the Commission launched a public consultation to collect the views of all interested citizens and...
On February the 2nd 2021, the Frontiers in Medicine journal (Impact factor 3.9) published the article named ‘Paediatric Medicines in Europe: The Paediatric Regulation—Is it Time for Reform?’ The article, written by regulatory experts from the TEDDY Network, is aimed...
Consent requirements are not harmonised in Europe and vary according to national laws and regulations. These discrepancies can present challenges for paediatric clinical trials, especially as many are conducted as multinational trials. The Enpr-EMA working group on...
Within the European Joint Programme on Rare Diseases (EJPRD), Pillar 3 WP15, TEDDY is responsible of the preparation for the educational materials and training activities for the paediatric patients. Education of young people is essential to incorporate them as...
In full COVID-19 emergency, most scientific studies have focused their research on adult patients. New drugs, vaccines and transmissibility factors were only analysed in the case of adult patients and children and adolescents were given little consideration. As it is...