I am delighted to be given an opportunity to host a #WhyWeDoResearch tweetchat on paediatric research as I would value the opportunity to hear the opinions and experiences of those that host, run and participate in paediatric research. Each countries research settings vary therefore this tweetchat offers a fantastic opportunity for us to learn from each other.
I have written down the questions that I will be asking during the paediatric research tweetchat and very much hope that you will be able to join the conversation on 15th February. There is an option to leave comments at the end of this blog and I will include these in the tweetchat.
Public and Patient Involvement (PPI) is now seen as an expectation and not an optional add-on to the design and running of studies. Should all sites have a paediatric PPI group to review studies and to guide the development and implementation of studies? Should these groups involve parents, or should a separate parent PPI group exist? |
There is a greater emphasis for paediatric research to develop medicine and devices specifically for neonates, infants and toddlers, children and adolescents. Most clinical trials, registered on EU Clinical Trials Register, are for older children and few are registered for toddlers, infants and neonates. What reasons/ barriers are causing young children and neonates to miss out on having the opportunity to avail of taking part in clinical trials? Why are clinical trials not being developed for young children and neonates? |
Informed consent and assent are legal and ethical requirements for recruiting into a paediatric study. The guidance on who can give parental consent and child assent differs across the EU. Practices also differ on when the parent(s) of the child are children themselves. Some research has suggested using competence and not an age-based assent/consent process for recruitment and others have debated what constitutes assent. What is your experience and opinion on how to approach consent and assent for paediatric research. |
Recruitment, and retention, of research paediatric nurses is difficult. One approach has been to employ nurses and midwives (without a paediatric qualification) as a research nurse/midwife to work on paediatric studies. Is this something that those working and/or managing paediatric studies agree with? What other approaches have been taken to recruit and retain of paediatric research nurses? |
In Ireland most research networks are via the Health Research Board (HRB) and they have clinical research networks for various diseases/conditions. So far, there is only one network (HRB- Mother and Baby Clinical Trial Network) that offers clinical trials to neonates (and only in level 3 neonatal units in maternity hospitals) and none support research for a paediatric population. As more research networks are being planned - should research networks have a separate paediatric arm or should there be separate adult and paediatric networks for the same diseases/conditions? |
Don’t forget to join the #WhyWeDoResearch tweetchat on 15th February 8pm GMT / 3pm EST to add your voice to the discussion!