ECCTR aims to provide insight in corneal transplantation practice patterns and real-life experiences.
Professor Rudy MMA Nuijts, Professor Mats Lundström and Professor Francisco C Figueiredo
In October 2019, almost 60 people from 16 EU countries attended the final European Cornea and Cell Transplantation Registry (ECCTR) project conference in Brussels, Belgium.
ECCTR, established in 2016 is now up and running successfully, with data on 12,922 transplants from 12 countries already submitted for analysis.
The registry contains information on the recipient, donor and eye bank processing, transplant procedure and two-year follow-up including graft survival and failure and patient-reported outcome measures (PROMs).
The median age of patients undergoing corneal transplantation is 70 years. The predominant diagnosis for transplantation is Fuchs’ dystrophy, followed by graft failure, pseudophakic corneal oedema and keratoconus.
The project is co-funded by the European Society of Cataract and Refractive Surgeons (ESCRS) and by the EU under the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA).
Professor Rudy MMA Nuijts MD, PhD, Maastricht University Eye Clinic, Maastricht, the Netherlands, said the ESCRS actively supports three major registers:
The European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO); The European Cornea and Cell Transplantation Registry (ECCTR); and The European Registry for Childhood Cataract Surgery (EuReCCa).
Prof Nuijts said modern technology has improved the application of lamellar transplantation technique.
“Registries provide insight in corneal transplantation practice patterns and real-life experiences. I hope that today inspires new ideas, new partnerships, influences new policies and discussion around the ways we can cooperate further,” he said.
Professor Mats Lundström PhD, MD, professor emeritus at Lund University, Sweden, said ECCTR aimed to build a common outcome assessment methodology for corneal transplantation; clinical outcome measures and patient-reported outcome measures; establish an EU web-based registry and network for academics, health professionals and authorities; and assess and verify activity data and the safety, quality and efficacy of corneal transplants.
“We can build on our results,” said Prof Lundström, “by harmonising existing partner registers, creating and facilitating a European network of practitioners and by strengthening cooperation between EU Member States and Competent Health Authorities.”
Professor Jesper Hjortdal MD, PhD, Aarhus University Hospital, Denmark, said the first meeting of the European Eye Bank Association (EEBA) took place in Aarhus, Denmark in 1989.
“Founded with the simple objective of sharing information regarding eye-banking, the Association is today the leading pan-national association in Europe dedicated to the advancement of eye-banking and an authoritative reference point for eye banks wishing to work according to quality standards,” he said.
“The ECCTR is a globally new and unique platform for further collaboration between eye banks and corneal surgeons to learn and improve the quality of corneal transplant procedures – all to the benefit of future patients,” he said.
Mor Dickman MD, PhD, Maastricht University Eye Clinic, said quality improvement registries like ECCTR offered treasure troves of invaluable data.
“Regulatory agencies and other stakeholders increasingly rely on data collected through registries to support their decision-making,” he said. “Data from registries forms the cornerstone of post-marketing surveillance of medicines, medical devices and advanced therapy medicinal products. Health technology assessment is also increasingly in need of real-world data. Inclusion of costs and resource use can inform health-policy decisions, for example in case of conditional reimbursement models.”
Dr Dickman said that from a global perspective, more than 185,000 CT procedures are performed each year, making corneal grafts one of the most common transplant procedures.
“However, 12.7 million people are awaiting a corneal graft, and only one cornea is available for 70 needed,” he said. “Regenerative therapies offer the promise of even better outcomes for our patients, and lower demand for donor tissue.”
Dr Dickman also gave an interesting insight into what the registry might look like in five years’ time, taking into account the increasing influence of artificial intelligence in ophthalmology.
“The registry of 2025 could look dramatically different from the registry of today,” he said. “Digital health includes a wide variety of technologies such as health IT, personalised health (e.g. genomics) mobile sensor readouts (e.g. Google Glass) or mHealth and patient-generated data (e.g. PROMs).
“Artificial intelligence and machine learning algorithms can unlock this knowledge to improve allocation of scarce resources, reveal patient phenotypes, reduce repeat interventions, prioritise patients and stratify outcomes,” Prof Dickman concluded.
Francisco C Figueiredo MD, PhD, FRCOphth, Professor of Ophthalmology at Newcastle University, UK, spoke about Developments in Limbal Stem Cell Transplantation, another area of interest for the ECCTR. Stating that there were 240 estimated new cases of limbal stem cell deficiency (LSCD) per year in the UK, in otherwise healthy eyes, he said that it is essential to develop alternative therapies.
However, studies have shown that autologous limbal stem cell transplantation can successfully restore the integrity of the ocular surface of eyes with total unilateral LSCD and consequently restore sight. In bilateral cases autologous oral mucosa stem cell transplantation has also shown good outcomes.