COVID’s Lasting Consequences for Kids

Dr. Jeremy Faust, editor-in-chief of MedPage Today has interviewed Dr. Zachary Rubin, allergist and immunologist of Oak Brook Allergists in Illinois, to discuss the lasting effects of COVID-19 on pediatric health.  According to Dr. Rubin there is not a single clinical phenotype for patients with long COVID. Patients can present:   brain fog and other neurological

January 26th, 2023|

Workshop on quality criteria/standards of paediatric clinical trial sites

The workshop, co-organised by the European network of paediatric research at the EMA (Enpr-EMA) and conect4children (c4c), was held virtually on October 3, 2022. Participants included members of Enpr-EMA and of c4c, members of the European Medicines Agency’s (EMA) Paediatric Committee (PDCO) as well as members of EMA’s Paediatric Medicines Office, along with invitees representing

January 13th, 2023|

Becoming a Leader: Donato Bonifazi on ‘Managing Trials’

Dr Donato Bonifazi, in his role as iCAN Advisory Board Member, has participated in the International Children’s Advisory Network (iCAN), “Becoming a Leader” short videos series to talk about the challenges of conducting clinical trials for and with the paediatric population.   According to Dr Bonifazi “we’ll not only need to adapt adults' medicines to

January 13th, 2023|

Adolescent Inclusion Decision Tree

The European Forum for Good Clinical Practice (EFGCP) Children’s Medicines Working Party (CMWP) has developed an open-access “Adolescent Inclusion Decision Tree” to be used by trial sponsors, trial investigators, IRBs/ethics committees, and health regulatory agencies, when a trial with age-inclusive trial design is being explored, developed or reviewed.   The tool outlines over-arching principles for consideration,

January 11th, 2023|

Project MADAM (Model Adjusted Doses for All Mothers)

Project MADAM (Model Adjusted Doses for All Mothers) is a collaboration between Radboud UMC and Maastricht University Medical Centres in the Netherlands and the Dutch Teratology Information Service (Lareb) with funding from the Gates Foundation that addresses the gap of knowledge and limited information on medication doses in pregnancy.  In particular, this project aims to

November 3rd, 2022|

Reducing long-term complications in preterm infants

In a new study, a team of researchers from Inserm, University Hospital Lille, and Université de Lille at the Lille Neuroscience and Cognition laboratory has opened up interesting avenues to improve the prognosis of preterm infants.   By conducting research into congenital hypogonadotropic hypogonadism, scientists have discovered the key role that nitric oxide synthase (NOS1) plays

November 3rd, 2022|

TEDDY engagement in promoting good practices developed with participatory methodology

TEDDY is always proactive in addressing ethical, legal, social and regulatory issues of paediatric research, enhancing the awareness of the main stakeholders on the still unmet needs and peculiarities of children. TEDDY has participated in several European initiatives aimed at promoting the engagement of children and young patients in decisions regarding their health both

October 21st, 2022|

#ACT4RARE Toolkit – New UN Resolution Toolkit Launch

The UN Resolution on Persons Living with a Rare Disease was adopted in December 2021. Now, you can use all the information included in the kit to raise awareness and call action to the UN Resolution in your own country.   What can you find in this kit?  – A summary of the actions all

October 19th, 2022|

The Second Paediatric Expert Patients Training Workshop was a success!

The workshop organized by the TEDDY Network in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJP RD), was held the past July 11th -15th at the University of Lyon (France) during the 2022 International Children’s Advisory Network (iCAN) Summit (please

September 14th, 2022|

KIDS Albania and KIDS Bari participation in the 2022 iCAN Summit

TEDDY Network’s young persons advisory groups (YPAG) from Albania (KIDS Albania) and Bari (KIDS Bari) have joined the 2022 International Children’s Advisory Network (iCAN) Summit that was held in-person last July 11th-15th in Lyon, France.  During these intense and productive 5 days of meeting, which was totally devoted to Rare Diseases (RDs), participants had the

September 12th, 2022|