📣 Help improve diagnosis for inherited metabolic disorders
Claire Hart, a Clinical Scientist at Sheffield Children’s Hospital, is inviting individuals and parents of children with an inherited metabolic disorder to take part in a research to plan a study focusing on “Metabolomics”, a technique that could improve diagnosis for people living with IMDs. This will be conducted remotely with no travel required.
Who can take part?
People who are:
-
Living with an inherited metabolic disorder
-
A parent or carer of a child with an inherited metabolic disorder
What’s involved?
You’ll take part in a one-hour online group session (via Zoom or similar), which will include:
-
A short introduction to Claire and her work
-
A 15–20 minute presentation explaining the research and sample collection in plain English
-
Group discussion on how clear and understandable the presentation was, and suggestions for improvement
-
A conversation about how acceptable it would feel to be asked for urine or blood samples in different situations (e.g. at routine appointments or when unwell)
-
A short follow-up questionnaire to share any additional thoughts or feedback
What do participants receive?
-
£25 payment for your time (paid by bank transfer only)
-
The opportunity to shape how future research is explained and delivered.
Interested?
Email Claire at: claire.hart10@nhs.net
Please include your preferred time (weekday, evening or weekend). Claire is happy to answer any questions.
📣 Help improve the experiences of young people in intensive care
Researchers from University College London, Imperial College London, Great Ormond Street Hospital and others are inviting young people, families and healthcare professionals to take part in the OPTICAL study (Optimising Paediatric Transition to Intensive Care for AduLts). The study aims to develop clearer guidance to improve the move from paediatric to adult intensive care.
Who can take part?
-
Teenagers and young adults (aged 16–21) who have:
-
Been admitted to paediatric intensive care at least once since their 14th birthday, and
-
Been admitted to adult intensive care at least once
-
-
Parents, carers or family members of young people meeting the above criteria
-
Healthcare professionals supporting young people in paediatric or adult intensive care, or in community settings
What’s involved?
You’ll be invited to take part in a one-hour interview (online via Zoom, by phone, or in person). This will include:
-
Sharing your experiences of intensive care services
-
Discussing what worked well and what could be improved
-
Helping shape recommendations for better support during transitions
What do participants receive?
-
The chance to directly influence improvements in intensive care services and policy
-
An opportunity to share your experiences and be heard by researchers working to make a difference
Interested?
Email: optical@gosh.nhs.uk
Phone: 07444 664619
More information: OPTICAL Study Website
