High quality research depends on listening to the voices of children and young people, as well as their families and carers, taking account of their experiences, priorities and perspectives.
GOSH is committed to the Department of Health’s national strategy which puts patients at the centre of all NHS-related activity.
Children, families and members of the public can be involved:
- As patients/participants voluntarily taking part in clinical or other well designed studies.
- As patients and public members working with researcher professionals and clinicians and getting actively involved in the different stages of research.
Taking part in the 100,000 Genomes pilot project
Georgia, aged four, is under the care of Great Ormond Street Hospital (GOSH) clinical geneticists and attended GOSH to take part in the pilot study for the 100,000 Genomes Project. Here her mum, Amanda, tells us about taking part in a research study.
Clinical trial for XLH
Ten-year-old Lottie and her brother Ashley, nine, began coming to Great Ormond Street Hospital (GOSH) in 2014 to see Dr William Van't Hoff. They were keen to hear about a new clinical trial for children like them with X-linked hypophosphatemia (XLH) rickets – a genetic condition which prevents normal levels of phosphate being maintained in the blood. XLH can cause pain, bending of the bones and poor growth.
Sanfilippo syndrome – metabolic clinical trial
Stanley, aged two, has Sanfilippo syndrome and attends Great Ormond Street Hospital (GOSH) with his family to take part in a clinical trial at the Somers Clinical Research Facility (CRF). The trial is led by Dr Cleary and supported by CRF research nurses.
Protein allergies and Edie's clinical trial
Edie, aged seven months, attends the Somers Clinical Research Facility (CRF) at Great Ormond Street Hospital (GOSH) with her mum Jess. She is taking part in a clinical trial looking at the use of pre and probiotics in infant formula milk for babies with allergies.
Vasculitis clinical trial
Katie, now 15, started coming to Great Ormond Street Hospital (GOSH) after being diagnosed with vasculitis and is now taking part in a clinical trial. Katie tells us about her condition and why she chose to take part in research.
There are many different ways of getting involved with research at GOSH or the UCL Institute of Child Health. You can be a research participant in a study, or you can get involved in the background design and implementation of a research project.
If you are a parent of a child receiving care at GOSH, or you are a patient yourself and are interested in what studies are available to you to take part in, please contact your consultant in the first instance. She or he will know if there are any studies going on in that area/disease group that would be available to you or your child to take part in.
Getting involved and engaged with research
There are many different ways you can get involved in helping to advise about research studies going on at GOSH or the UCL Institute of Child Health. For example, you can help advise on the overall research design, helping to develop the research project, or assisting with getting the results of a study out to the general public. The following websites may be useful in identifying opportunities open to you:
- INVOLVE provide information and resources for people wanting to help develop research.
- Involving London promotes opportunities from across London where you can get involved and details of training and other events.
- People in Research allow you to search for further involvement opportunities relating to specific conditions.
If you are interested in becoming involved in one of our Patient and Public Involvement or Engagement activities, please contact our PPI/E lead for research, Dr Erin Walker, for more details.
Coming to the Somers Clinical Research Facility
The Somers Clinical Research Facility (CRF) is a purpose built day-care facility for children and young people taking part in clinical research studies. It provides a welcoming, safe and appropriate environment for children, young people and their families. The facility has a dedicated team of Children’s Research Nurses that care for children and their families when they are taking part in a clinical study.