We spoke to one of our longest-standing members of staff about his work to develop the IPD-IMGT/HLA Database – a crucial tool in the provision and research of stem cell transplants across the world, which has just hit a major milestone.
James Robinson is Head of Bioinformatics at Anthony Nolan. He specialises in analysing large amount of complex biological data, like genetic information. This is an incredibly important role, as the life-saving matches we make for patients are based on finding people who are as genetically similar to one another as possible.
“I entered the world of stem cell transplant via an EU grant to develop a small database created by Professor Steven Marsh at the Imperial Cancer Research Fund. He’d developed the database to record all the variations of genes involved in matching stem cell donors and recipients.
“At the time I had no idea how important this work would be, or the long-lasting impact it would have.
“After a few years myself, Professor Marsh and the database all moved to Anthony Nolan – where it has continued to evolve for the last 25 years.”
A cornerstone of global transplant research
That early database became what is now the IPD-IMGT/HLA Database – a crucial tool in global transplant provision and research.
The database is the only universal ‘reference book’ for the HLA genes that are important in matching transplant donors and patients. This is important because these genes are incredibly varied, and need to be understood and catalogued very well in order to create the best matches for patients.
“It started out small,” James said. “I remember the first time I presented the database at a conference people were excited, but I didn't quite understand why.”
Now, the database has just hit over 40,000 entries. It’s visited over one million times a year to help scientists and clinicians deliver transplants and conduct research to improve outcomes for patients. It means anyone who has received a transplant – whether stem cell or solid organ – has most likely benefitted from the existence of the database.
From humble beginnings to a world-leading resource
To build the database James explains, “I wrote every single line of code for every single function, whether it was the public website that clinicians and researchers can view, or the tools to gather and store new genetic variants as they were discovered.
“As better tools to study and sequence DNA were developed and the volume and complexity of genetic information increased, we realised we needed more than just myself and Professor Marsh to build and maintain the database.
“We now have one full time developer, which means I no longer write every single line of code. We also have two curators who oversee new submissions of variants of the HLA genes as they are discovered. But it’s still a realtively small and dedicated team who work on this.”
“Professor Marsh is also still really involved. Nothing is added to the database without his approval, and every one of the 60,000 submissions, covering 40,000 sequences, has been personally named by him. That’s something that makes our work special. We don’t rely on algorithms – everything is curated by experts.”
Working hand in hand with research to improve outcomes for patients
Over the years, the database has become essential in Anthony Nolan's work to save lives through stem cells.
“By acting as a gold-standard reference for all things HLA, the database is fundamental for helping our clinical teams find the best stem cell matches for patients. Without it, we wouldn’t be able to understand someone’s true HLA type and go about finding their closest match.
“It also informs all our research – from understanding what factors improve transplant success, to predicting how we can target recruitment to maximise the chances of everyone finding a match.”
“Our lab teams also support the database. They send us a constant stream of new genetic sequences from people who sign up to the register, and we make sure every new HLA variant we find is catalogued on the database for future reference.”
50 years and counting as technology trendsetters
“Anthony Nolan took a leap of faith in investing in bioinformatics before anyone realised how important it would be,” James told us. “And we still have that mindset.”
“We’re constantly looking at new technologies we think could be useful. Like using the cloud instead of physical computers to store and analyse our data. Or looking at how AI could help us work smarter and faster. And we’re always asking new questions of the data to keep learning about how to improve outcomes for patients and donors.
“Although I’ve been working on the database at Anthony Nolan for 25 years, my role never stays the same. There are always new questions to be answered, and new technologies to explore. And that’s why I love it.”
Learn more about our research, or about signing up to the Anthony Nolan stem cell register.