The Dinosaur Trust has a special relationship with Great Ormond Street Hospital.
Not only has Archie received life-saving treatment for PAH at Great Ormond Street Hospital (GOSH), we now work very closely with the Great Ormond Street Hospital Charity.
The Dinosaur Trust team at Great Ormond Street Hospital:
Dr Shahin Moledina (Consultant Paediatric Cardiologist, Lead Clinician for National Paediatric Pulmonary Hypertension Service UK)
Lynsay MacDonald (Research Nurse)
Annabelle Barnes (Research Assistant)
After raising our first round of funds, we asked Shahin Moledina, head of the PH department at GOSH and Lead Clinician for the National Paediatric Pulmonary Hypertension Service UK, how we could best help them gain access to the latest stem cell and genetic research taking place at Cambridge University, and how we could help accelerate and improve the PAH service at Great Ormond Street Hospital.
He explained that it’s essential to have a research nurse. They work together with patients and families raising awareness of relevant research projects, explaining research aims and answering families’ questions. It is their job to make sure patients and families give fully-informed consent before they take part in any study.
The research nurse takes blood samples from the patients and sends them to the lab to be checked and filed, they also co-ordinate the daily management of research studies, collating and inputting all the clinical data. The Dinosaur Trust has now committed to six years of salary for this vital research nurse.
Jamie recently chatted with Lynsay about her role at GOSH.
Lynsay moved to another department in Great Ormond Street in 2024 but remains closely involved with the team and as always is super supportive.
Here is the adorable therapy dog Lola with Annabelle. Lola brightens everyone’s days up and is a crucial part of the team.
Recent work highlights…
Here is Lynsay at the UKCRF Conference in Nottingham, sharing how the PH research and clinical team work together to make research a part of hospital visits.
Annabelle is seen here presenting recruitment rates and reasons for the decline in the Cohort study in San Francisco.
The Groningen poster – see Annabelle presenting below – was a follow-up to San Francisco. We carried out focus groups to find out more about young people’s views on research, their opinions on participating, as well as their thoughts on current projects, and future research goals. Some of the findings from the focus groups are presented in the Groningen poster.
The Groningen poster
Studies currently recruiting:
Stay tuned for updates on patient and public involvement projects, where we heard your views on PH research!
We’ve also helped create a link between GOSH, Imperial College and The University of Cambridge
Without sharing knowledge scientists and physicians are often limited in their ability to find cures for diseases. From the outset, opening pathways of communication between institutions was a priority for The Dinosaur Trust. We regard collaboration and sharing expertise and insight as crucial to realising research goals.
As a result of the research we support, new genes responsible for causing pulmonary hypertension have been identified. In addition, proteomic and metabolomic studies, looking at small molecules in the blood, have identified markers of disease and shed light into important biological pathways.
Our perspective on life has been profoundly changed by our personal experience at GOSH. We’ve always been humbled by the work of the staff at GOSH. We owe our son’s life to them so it feels good to build a partnership with them. We hope our work together will continue for many years.
Find out more about our Pulmonary Hypertension Research Nurse, Lynsay MacDonald
How long have you been working at GOSH?
I have been working at Great Ormond Street Hospital since 2016, coming from a background in adult cardiac nursing. I have been a children’s research nurse for pulmonary hypertension and PAH since 2018, funded by The Dinosaur Trust.
What does your role involve?
My role at GOSH is to coordinate the set up and running of research studies related to pulmonary hypertension. I liaise with researchers throughout the UK and worldwide to help support their studies.
What does a typical day look like for you?
I’m not sure there is one! Our work at GOSH is varied. Some days we are screening patients to check who might be eligible for studies and reaching out to them.
We attend clinic to complete consent forms with families and answer any questions families have about studies they have been invited to participate in. I also spend time in the clinical laboratory within Zayed Centre for Research, which opened in 2019. There, we collect and process research samples and get them ready to be sent to the study that they have been requested for.
We also collect and submit research data from medical records, organise the set-up of new PH studies and keep up to date with new and emerging PH research.
Who or what inspires you in your work?
The PH and PAH children I meet at Great Ormond Street Hospital (GOSH) inspire me to continue in research – to find better ways to improve their quality of life and the treatment options that are available to them.
What do you like to do outside of work?
When I’m not running around after my own toddler, I like to participate in long-distance running events. I recently completed the Virgin London Virtual Marathon in October. For the first time and would love to run the London Marathon properly when it returns. Another goal is to complete the Dopey challenge in Walt Disney World, a 48.6 mile mega-marathon which is split up over 4 consecutive days! It’s quite the challenge and I’m not sure if I will ever be able to achieve it, but it’s something to keep building towards.
