Registries: One of the Cornerstones for the Progress of Solid Organ Donation & Transplantation

Transplantation Registries

Organs are scarce and SARS-CoV-19 (COVID-19) aggravated the current situation of transplantation

Each day, the lack of organs means 56 patients on waiting lists for a solid organ die, worldwide. Although 149 551 patients benefited from an organ transplant in 2019, 328 218 patients were left (in 2019) on a waiting list at the end of the year [i]. The problem is well known and documented; scarcity of organs and significant death rates while on waiting lists affect patients all over the world.

COVID-19 pandemic is further deteriorating the situation and Transplantation Programs are in the casualties front-line, as we wrote in April[ii]. The scattered warning signs we had, are being confirmed by studies published worldwide. A recent joint paper of American and French experts measured the effect of the pandemic in their respective countries[iii]. In France, the reduction of deceased donor transplantation since the COVID-19 outbreak was 90,6% and the USA the reduction was of 51,1%. The pandemic profound impact on organ donation and transplantation was felt in all EU Members[iv].

As COVID-19 spreads rapidly across the world, healthcare leaders have been forced to make difficult decisions about how to stretch their limited health resources. At his moment, it seems that medical activities to support the population with COVID-19 and Transplantation are incompatible. The result is unsettling, the overwhelming burden of the pandemic on healthcare systems has a direct impact in the solid organ transplantation procedures and the choices being made seem to be particularly devastating for a very vulnerable group of patients: those in need of an organ transplant.

Registries are one of de cornerstones for development in disease management

Data is instrumental to prevent, diagnose and treat any disease; to identify and map disease trends, and delineating the adequate strategies to deliver the best outcomes; to promote quality improvement, by providing a benchmark to demonstrate best practices; to support protocol, decisions, and consensus.

The quest for data is not new for donation and transplantation; it started 50 years ago and has been throughout documented (non-exhaustive):

Date Where Challenge Solution (amongst others)
1969 ERA-EDTA European Renal Association − European Dialysis and Transplant Association registry[v] Ensure the collection of data in Europe as a permanent activity. Creation of an international Registry
1985 ELTR – European Liver Transplant Registry [vi] (Conception objectives) Registry of all liver transplantation (LT) procedures in EuropeLink between European LT CentersScientific use and publications. Creation of an international registry
1998 IRODat reports[vii] Provide data for epidemiological and demographic studies covering a consistent up-to-date global situation on organ donation, transplant donors’ sources, types, and technical performancesHelp to increase public awareness and transparency about transplantation. Creation of an international registry
2008 Action Plan on Organ Donation and Transplantation (2009-2015)[viii] Facilitate the interchange of organs between national authorities Evaluation of post-transplant results Design IT tools to support the evaluation of procedures for offering surplus organs; ensure the implementation of procedures for the exchange of organs for urgent and difficult-to-treat patients.Develop a registry or network of registers to follow-up organ recipients
2011 Report of the Madrid Consultation[ix] Ensure better risk prediction concerning the outcomes of transplants from expanded criteria donors and nonstandard risk donors Data availability from each country organ donation and transplant registriesCreation of a Europe-wide registry.
2012 International practices of organ donation [x] Provide the evidence base for the development of transplant practiceBenefit patients through monitoring of allocation and transplant outcomesProvide transparency to the entire pathway from donation to transplant. Registries play a significant role answering these challenges
2017 Lancet Commission[xi] Research activities require the development or enhancement of registries in countries around the world, to ensure the disease documentation. Creation of registries for disease documentation
2020 Impact of COVID-19 in France and the USAiv Enable the identification of areas where transplants have not recovered well and support their needs. Creation of a detailed cartographic mapping of trends in organ donation and transplant
2020 Statement of the EU National Competent authoritiesiv Foster recovery of donation and transplant programmesBe prepared for possible future outbreaks. Implement digital solutions for EU-wide data collection and monitoring of post-transplant outcomes and vigilance. Strengthen and support set-up and implementation of national and EU transplant registries.

We believe that today, more than ever, registries and registries quality will be mission critical to unveil the path out of this pandemic, and in the creation of a future, where we are more prepared to deal with pandemic events.

We advocate full knowledge and analysis of registries data as a starting point for the definition of objectives and development of strategies to mitigate the scarcity of organs.

TransplantHUB is, at its core, a registry

TransplantHUB® is a software developed to ensure an effective management of solid organ donation & transplantation programs.

At its core, TransplantHUB® is a sound registry of all the events in a donation and transplantation ecosystem, from the need of the patient in the waiting list as an outpatient, from possible donors to actual donors, procurement flowcharts and medical procedures, organ allocation and transportation, patient transplantation, post-transplant acute care, and follow-up information, thus a powerful enabler of innovation.

We are prepared to support healthcare efforts, around the world with TransplantHUB.

To find out more about how we may help, please contact us and we’ll be more than happy to arrange a meeting and demonstrate it further.

[i] Newsletter Transplants – International Figures on donations and transplantation 2019, EDQM, ONT, Council of Europe, Sum of the Number of Active Patients on Waiting Lists on December 31, for all organs, 2019; accessed 5/12/2020

[ii] A Post COVID Contingency Plan is Needed; TransplantHUB Blog, April 17, 2020;; accessed 5/12/2020

[iii] Organ procurement and transplantation during the COVID-19 pandemic; Alexandre Loupy, Olivier Aubert, Peter P Reese, Olivier Bastien, Florian Bayer, Christian Jacquelinet; The Lancet, May 11, 2020; , accessed 3/12/2020

[iv] Statement: Organ Donation and Transplantation and the COVID-19 pandemic, EU National Competent Authorities on Organ donation and transplantation, June 2020,; accessed 3/12/2020

[v] European Renal Association − European Dialysis and Transplant Association Registry, ERA-EDTA Registry –,accessed 5/12/2020

[vi] ELTR Registry- European Liver Transplant Registry.; accessed 5/12/2020

[vii] IRODaT, the International Registry in Organ Donation and Transplantation.: Abstract# B1221, Gomez, M.; Perez, B.; Valero, R.; Paez, G.; Balleste, C.; Manyalich, M, July 15 2014;,_the_International_Registry_in_Organ.2848.aspx , accessed 2/12/2020

[viii] Action plan on Organ Donation and Transplantation, Communication from de Commission, (2009-2015): Strengthened Cooperation between Member States; European Commission, 2008

[ix] Report of the Madrid Consultation Part 1: European and Universal Challenges in Organ Donation and Transplantation, Searching for Global Solutions, 2011

[x] International practices of organ donation; C. Rudge, R. Matesanz, F. L. Delmonico, J. Chapman; Oxford University Press on behalf of the British Journal of Anesthesia, 2012

[xi] Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on enabling the digital transformation of health and care in the Digital Single Market; empowering citizens and building a healthier society, The Lancet Commission, 2017

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