From Surgery to First Steps: Dr Goodden's Story

Andreas Landsverk,
Director of Partnerships

Dr John Goodden, a consultant neurosurgeon at Leeds Teaching Hospitals NHS Trust, performs selective dorsal rhizotomy (SDR) surgery in children with cerebral palsy to help them walk. Now, the database, which has been key to secure NHS funding for the procedure, has been moved to Ledidi Core, enabling Dr Goodden and his team to perform in-depth analyses to further enhance patient outcomes.

SDR is a highly specialised operation to selectively cut spinal sensory nerves to reduce leg spasticity in children with cerebral palsy, leading to improved function, mobility and quality of life. Dr Goodden’s experience with this technique began after training with the renowned and sadly recently deceased Dr Park in the USA, before introducing the procedure at the Leeds Children’s Hospital, Leeds Teaching Hospitals NHS Trust.

Dr Goodden with Dr Park at St. Louis Children’s Hospital, October 2010

Since 2012, Dr Goodden has meticulously recorded each surgery creating a comprehensive database that has now become central to proving the value of this life-changing operation. In his first meeting with Ledidi, Dr Goodden referred to his comprehensive database as a “labour of love”. The database contains not just patient information and clinical information the surgeries and the clinical outcomes, but also tracks their GAIT profile scores, GMFM and Ashworth scores, quality of life (CPQoL) over extended periods of time after the surgery.

The database contains detailed records on nearly 200 patients, which has been used to demonstrate the safety and efficacy of this pioneering surgery for the NHS, in publications and at international conferences. Dr Goodden was part of the team providing evidence to NHS England, drawing on his experience and the data. As a result of the evidence presented to NHS England, SDR surgery funding was started in July 2018 for children aged three to nine — saving families considerable costs and eliminating the need to travel abroad to get the surgery.

As part of a pilot project with Leeds Teaching Hospitals NHS Trust, Ledidi has collaborated with Dr Goodden to move his Excel-based database into Ledidi Core. This longitudinal clinical registry combines the existing retrospective data with prospective data collection and allows for real-time monitoring of outcomes in dashboards. Ledidi Core will provide Dr Goodden and his extended team to work collaboratively to collect, monitor and analyse the data in real-time.

Recently, Dr Goodden presented the five-year follow-up data from almost 100 SDR patients at the 50th Annual Meeting of the International Society for Pediatric Neurosurgery in October 2024. The data analysis tools from Ledidi Core allowed a greater depth of data analysis for this outcome analysis. Moving forward, Ledidi Core will enable him to generate analyses and visualisations to support discussions at multidisciplinary team meetings, conferences, presentations, and academic publications.

Dr Goodden’s data and other studies show that SDR is an effective treatment for children with cerebral palsy. SDR leads to lasting improvements across multiple areas of their lives. Spasticity has improved in all patients, with no return of symptoms after five years. Most children continue to gain improvement in mobility scores five and even ten years after the surgery. Quality of life also improves, especially in areas like physical health, participation in activities, and feelings about their own functioning, with the biggest gains seen in the first year and ongoing lasting benefits beyond that at 5- and 10-year follow-up.

"Working with the team from Ledidi has been a pleasure. The database functions and support from their biostatisticians and programmers has been transformative. Moving our data from an Excel spreadsheet into a fully functional database is allowing us to analyse these data in new ways, unlocking outcome associations and trends, and allowing us to explore new ways to predict outcomes," said Dr John Goodden, Consultant Neurosurgeon, Leeds Teaching Hospitals NHS Trust.

"I can genuinely say that I’ve never been so excited by data before! Seeing our data being explored, analysed and opened up through the Ledidi Core database and analytics team has left me beaming with excitement as we consider how we can apply new lessons to our understanding about SDR surgery."