As you may already know, ECRD 2020 will now take place exclusively online, on 14-15 May using an interactive online platform. It is now possible for more people than ever to register to participate online from the safety and comfort of your own home, wherever you are in the world. In line with moving online, registration fees have been reduced to make it easier to connect with the rare disease community from home. If you had already registered via the old registration form for the conference in Stockholm, you do not need to re-register. Once registered, you will be able to participate in interactive sessions led by over 100 industry experts built around six themes, including Theme 3: ‘Share, Care, Cure: Transforming care for rare diseases by 2030’, which has a particular focus on the role of ERNs. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community from over 50 countries around the world – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators. Despite the many challenges we are all currently facing, by joining the global rare disease community at ECRD 2020 you will help to shape the next decade of policy for people living with a rare disease! Kind regards, ECRD Secretariat
In the midst of the CORONA pandemic we want to inform you that there are 2 separate surveys to report Covid19 infected patients with underlying rheumatological or immunological conditions. The first one was setup by ESID and was reported at the RITA website on march 22. It is accessible by https://www.surveymonkey.com/r/67RBPNZ?
The second survey is specifically for patients with rheumatic conditions and is called COVID-19 European Patient Registry, written by the Global Rheumatology Alliance. The latter registry is aiming at patients and is open for adults as well as pediatric patients. So far, we have 2,146 adults and 374 children in the Registry, and have had 14 adults and 1 child diagnosed with COVID-19. It can be accessed at www.jarproject.org/covid
IPOPI is participating in the launch of a global survey on COVID-19 and PIDs, working jointly with International Union of Immunological Societies and other medical societies.
Please help us by disseminating the following survey to your national medical advisers and all national doctors who you know are managing PID patients in your country:
Happy to announce the 2019 HPO towards immune mediated disorders in Vienna on 17-18th October – Supported by ESID and ERN RITA and organized by LBI-RUD. If interested please get in contact with office (at) rud.lbg.ac.at
2019 call for membership to the existing European Reference Networks (ERNs) will open soon
Come and join us in Newcastle city centre for a full day of talks, interactive case discussions and networking opportunities, invaluable to anyone interested in childhood infection and immunity!
Discussing some of the speciality’s hot-topics in research, clinical medicine and public health at home and abroad, this year’s selected speakers include: Dr Ronan Leahy (Dublin), Dr Terry Flood (Newcastle), Dr Scott Hackett, (Birmingham), Dr Rosie Hague (Glasgow), Professor Andrew Gennery (Newcastle), Dr Peter Arkwright (Manchester) and Professor Sophie Hambleton (Newcastle)
Registration is free and lunch is included.
Please do circulate amongst your colleagues, to register please email email@example.com to secure your place, spaces are limited.
Novel Cross-sector Collaboration Establishes Pan European Paediatric Clinical Trial Network to Improve Infrastructure and Facilitate Development of Medicines for Children in Europe
PADOVA – 29 April 2019 – The conect4children (c4c) consortium today announced the selection of its first portfolio of pan-European paediatric studies aimed at advancing the understanding of high priority medicines commonly used in babies, children and young people in Europe. The four inaugural studies will be conducted by academic institutions, in addition to three or four studies by industry partners, covering different diseases and age groups.
The study portfolio will leverage the scientific quality, rigor and capabilities of the c4c network, a global consortium of more than 30 academics, 10 industry partners and a network of more than 500 affiliated partners. The research collaboration will be used to build and implement a pan-European paediatric clinical trial network whose goal is to improve the European paediatric clinical trial infrastructure in order to facilitate the development of new, innovative and safer medicines for children in Europe.
The selected studies will implement new ways to:
- Ensure that the experiences and preferences of children and young people are reflected in clinical trial design and minimise the burden of their participation in research
- Employ cutting-edge science and implement new, innovative ways to evaluate medicines
- Demonstrate the value of collaborating across 18 countries, building on a public-private partnership that blends expertise from leading industry and academic partners.
“Building on this portfolio of paediatric research, the c4c consortium aims to enhance the competitiveness of Europe as a critical region for developing medicines for children by using existing expertise, patient access and developing common processes to be applied to disease natural history studies, registries, studies of new therapies and comparisons of existing therapies,” said Professor Mark Turner, University of Liverpool, UK.
About the c4c pan-European paediatric studies:
- Paracetamol in Premature Babies: Will assess the effectiveness of paracetamol in premature babies with a patent ductus arteriosus, and aims to recruit around 600 babies as part of the study (Lead: Prof. Jean-Christophe Roze of INSERM, a public research organization in Paris, France entirely dedicated to human health)
- Steroids to Treat Kawasaki Disease: Will assess the effectiveness of adding steroids to standard treatment in children with Kawasaki Disease, and aims to recruit 262 children as part of the study (Leads: Dr. Depsina Eleftheriou and Prof Paul Brogan of the University College of London (UCL), an academic research institution in the UK).
- Posaconazole in Children with Cystic Fibrosis: Will assess the dose of posaconazole in children and young people with Cystic Fibrosis and infection with Aspergillus and aims to recruit 130 children as part of the study (Lead: Prof. Adilia Warris of the MRC Centre for Medical Mycology, University of Aberdeen and Ospedale Pediatrico Bambino Gesù (OPBG), a children’s hospital in Rome, Italy).
- Losartan to Treat Osteogenesis Imperfecta: Will assess losartan in children and young people with Osteogenesis Imperfecta and aims to recruit 30 children (Lead: Prof. Nick Bishop of the University of Sheffield, an academic research institution in the UK).
About Innovative Medicines Initiative and c4c
This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU), Europe’s biggest Public-Private Partnership, under grant agreement No 777389. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA (the European Federation of Pharmaceutical Industries and Association).
Under the name c4c, the new research consortium unites pharmaceutical companies, paediatric national networks as well as EU Multinational sub-specialty Networks, large patient advocacy groups, children’s hospitals and other public research organisations from across Europe. The full list of organisations involved in the project can be found at the c4c webpage www.conect4children.org.
Project Office/General Enquires: Email us. firstname.lastname@example.org
For more information about the research studies, contact:
- INSERM (France): Jean Christophe Roze email@example.com
- UCL (UK): Despina Eleftheriou firstname.lastname@example.org
- OPBG (Italy): Adilia Warris email@example.com
- Sheffield Children’s Hospital (UK): Nicholas Bishop firstname.lastname@example.org
This communication reflects the views of the c4c Consortium and neither IMI nor the European Union and EFPIA are liable for any use that may be made of the information contained herein
H2020-JTI-IMI2-2016-10. Proposal: 777389