Volunteering to take part in research

Scarlett, aged 8, took part in a research study as a healthy volunteer. The study compares certain parts of the brain in children with congenital hypothyroidism to those in healthy children, like Scarlett. In particular, the study looks for differences in the structures involved in hearing, speech and language.

Children with congenital hypothyroidism do not make enough of the hormone thyroxine, and it affects about 1 in 3,000 born in the UK. Thyroxine is important for development and babies do not grow properly without it, and may develop physical and learning difficulties.

It is hoped that the results of this study will help doctors to treat children with congenital hypothyroidism earlier on in life. Here, Scarlett and her mum, Cassie, tell us about taking part.

Finding out about the study

Cassie said: “I work at GOSH as a nurse and saw an email that called for healthy volunteers, about Scarlett’s age, to take part in this study. The study involves just one visit and we wanted to help other children.”

The visit

Research volunteer Scarlett with research nurse and an MRI scanner
Research volunteer Scarlett with research nurse and an MRI scanner
Scarlett was asked to come into hospital for a couple of hours to have a MRI scan and hearing test. The MRI scan is used to show connections between different parts of the brain. During the study, children with and without congenital hypothyroidism have their scans compared. Before taking part, Scarlett and Cassie met the researcher, Hannah, to discuss more about what would happen that day.

Scarlett said: “I came in to hospital as I wanted to help with research. I’ve taken part in a research study before and want to help other children. First, Hannah showed me a leaflet and explained what would happen. I asked what the tests are for and was given a picture, which Hannah used to tell me more.

“After that I lay down and went into a big scanner (a MRI scanner), which was very noisy but I didn’t mind it after a while. The radiographer, Tina, let me watch a movie and I chose Wreck it Ralph. I had to stay very still while they looked at pictures of my brain. After (the scan) I looked at shapes and pictures with Hannah and we played games. I also had a hearing test which was noisy. It was fun and I would like to do this again, I really want to help sick children. I would like to compare my brain with my friends!”

Any questions?

Cassie said: “The main question I had was would we know the results and find out what happens after? It’ll be interesting if we could find out how Scarlett’s brain development compares with other children her age. It’s good to help other kids.”

This study is planned to finish in spring 2016. The results will then be analysed and published at the end of 2016. Everyone who takes part will receive a report about the findings.

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