Studies and trials

Contact: Sammy Randall, samantha.randall3@nhs.net

Why is the study running?

Sometimes children with movement difficulties don't get the right help quickly.

The study aims to understand the healthcare experiences of children and young people with movement difficulties to help them get the support they need as close to home as possible.

Who can take part in the study?

Children and young people who are:

• up to the age of 18
• who are happy to take part in an interview (with support from a parent or carer)
• who experience movement difficulties as a result of cerebral palsy or brain injury

Their parents and carers can also take part.

What does the study involve?

Parents and carers

Parents and carers can complete an online survey to help us to improve care for children and young people with movement difficulties.

Children and young people

We'll ask participants to take part in an interview lasting up to 1 hour either at their school, online or an agreed space that they feel comfortable.

We'll do some activities to try to get to know them, including their hobbies, the things they enjoy, and what is important to them.

We'll ask them about the support and services they have had for their movement difficulties, and the things that helped and didn't help them.

Who is running the study?

The study is funded by the Tony Hudgell Rehabilitation Programme and hosted by the South Thames Paediatric Network in collbaoration with Evelina London.

How can I get involved?

Please email Sammy Randall at samantha.randall3@nhs.net.

Investigator: Emma Southby, cleft lip and palate matron
Contact: Vania Oliveira and Amanpreet Banga, research nurses, 020 7188 7188 ext 52237.

Why is the study running?

The cleft study is run with our cleft lip and palate service. It looks at children born with cleft (split) lip or palate and aims to understand:

• why cleft happens
• how cleft can affect a child's life
• how children with cleft can be better supported throughout their life

What is it trying to achieve?

Cleft lip and palate is a congenital condition, which means that it is passed down (inherited) from the child's parents.

Even though cleft is passed through a family, not everyone in the family will be born with a cleft lip or palate. In order to understand why this happens to some family members and not to others, the cleft study looks at the environment the family lives in and their DNA to see if there is any reason why some family members have cleft and some do not.

What does the study involve?

DNA is taken from saliva (spit), blood and tissue (muscle) samples from cleft children, their parents and their siblings.

What is the study's goal?

The study’s goal is to create a group (cohort) of children with cleft who can be followed until they reach 15 years of age so that we can build a better understanding of how having a cleft lip or palate effects their learning and development.

The study hopes to find a pattern (trend) that can be used to create better services and support for children born with cleft lip or palate

How can I get involved?

If you're interested in your child taking part in this research study, please speak to their doctor.

Investigator: Dr Alexandra Santos, senior clinical lecturer and children's allergy consultant
Phone: 020 7188 9524
Email: gstt.bat2@nhs.net

Why is the study running?

The current gold standard for diagnosing IgE-mediated food allergies is an oral food challenge. The Basophil Activation Test (BAT) is a new blood test for food allergy which has shown to be useful in the diagnosis of peanut allergy. It has shown to reduce the number of oral food challenges needed to confirm peanut allergy. It would be very useful to have a similar test for other common food allergies such as milk, egg, cashew and sesame.

What is the study trying to achieve?

The study aims to determine if the BAT can predict whether a participant is allergic or tolerant to the allergen of interest (milk/egg/cashew/sesame) and how the BAT results compare to the current gold standard for diagnosing a food allergy, which is an oral food challenge. As most milk and egg-allergic children can tolerate egg and milk as an ingredient in baked products, the study also aims to determine if the BAT can differentiate between those who can tolerate the baked form of these foods and those who are allergic to all forms of milk or egg.

What does the study involve?

The study involves a visit to the Evelina London Children’s Hospital for an oral food challenge, skin prick tests and a blood sample for specific IgEs and the Basophil Activation Test as well as a couple of phone calls. For the patients being assessed for milk or egg allergies, it also involves a short online food frequency questionnaire on the allergen of interest which is to be completed every 2 months for 2 years.

What is the study's goal?

The goal of the study is to assess the accuracy of the BAT in diagnosing IgE-mediated food allergy and potentially reduce the number of oral food challenges required to diagnose milk, egg, cashew and sesame allergies in the future. It will also allow us to understand how to make a better use of the allergy tests that we currently have.

How can I get involved?

If you are interested in your child taking part in this research study, please speak to your doctor or healthcare provider at our children's allergy service who can refer you to the study team.