This is how the new organ donation register works

What was previously only recorded on the small organ donation card in the wallet will now be stored in a central database: the organ donation register goes online. How does it work and what are the benefits?

In Germany, thousands of sick people are waiting for a donor organ. However, the willingness to donate organs is not particularly high in this country. In addition, it is often difficult to find out whether someone who has died suddenly is willing to donate. A new online register in which potential donors can register is intended to help. It has been activated since today, at www.organspende-register.de accessible and should supplement the organ donation card in paper form.

How does the new register work?

The introduction will take place gradually: First, it is possible to submit a declaration for or against organ donation using an ID card with online function and PIN (eID). Between July and September, registration will also be possible using a health ID. Insured people can get this from their health insurance company. From July 1st, hospitals should be able to access the declarations – and then transplant an organ in the event of a medical emergency.

Entry is voluntary and free of charge. It can be changed or revoked at any time. The register is located at the Federal Institute for Drugs and Medical Devices. According to the institute, the data is stored securely on a server in Germany. The declarations may only be accessed by authorized hospital employees. The institute wants to publish the number of declarations recorded in the organ donation register every year.

How could you be so far? Willingness to donate document?

Up to now, every person with health insurance from the age of 16 received regular information material from their health insurance company, which they could use to decide whether or not to donate organs and tissue after brain death. Ideally, everyone always carries their organ donor card with them, in which their current attitude is documented.

What improvement should the register bring?

The previously used organ donor cards could be lost or not be found in an emergency. Many clinics also find that people who are being considered as donors have not decided whether to say yes or no to a donation. Many relatives also feel overwhelmed in such a case and therefore decide against a transplant.

The new central register is available at all times. If organ donation is considered, hospital staff can access it around the clock and retrieve the potential donor’s declaration. The register is also intended to relieve relatives of having to make a difficult decision about organ donation in an emergency. The directory documents the decision and thus ensures clarity.

That remains Organ donation card still valid?

In order to enable legally secure documentation for people without internet access or a computer, the organ donor card will also remain valid in the future. Anyone who has filled out an organ donor card in the past and now wants to register their declaration in the digital register should make sure that the declarations match. According to the Federal Institute for Drugs and Medical Devices, the most recent, most up-to-date declaration always applies. In any case, it will continue to make sense to talk to your relatives about your personal decision in the future.

There are separate regulations for tissue donations. Why is that?

Tissue donation in Germany is organized decentrally; There are many more institutions – including non-clinical ones – that are taking part. Organizational and legal requirements must first be created for them. Therefore, the officially approved tissue facilities will be linked to the register by January 1, 2025.

Do other European countries have similar registers?

Similar registers exist in several European countries. In Denmark it was introduced in 2010; By the end of last year, 28 percent of all people over 15 were registered there. Great Britain introduced an organ donation register in 1994, and the Netherlands followed in 1998. While registration is voluntary in Great Britain, it became mandatory in the Netherlands. A British-Dutch study showed that just over half of the population registered on the British register, while in the Netherlands everyone is registered. Switzerland blocked its register in 2022 due to its vulnerability to hacker attacks. There should be a new attempt in 2026 at the earliest.

Has there been an increase in donor numbers in these countries?

In Switzerland there will be no increase in the number of donors until 2022. Franz Immer, director of the Swiss national organ donation organization Swisstransplant, also points out that the number of registrations in a voluntary register has always remained low. According to the KNA news agency, the number of donors did not increase significantly in the Netherlands either. The Medical Director of the German Organ Transplantation Foundation (DSO), Axel Rahmel, confirms this. So far, in no country where such a register has been introduced, there is “any evidence that it has an acute or long-term effect on the number of organ donations.”

What criticism is there of the new register in Germany?

The German Foundation for Patient Protection criticizes the complicated access to the register. The original plan was for citizens to have unbureaucratic access via the local authorities’ offices. However, this simple handling fails due to the lack of technical equipment in the offices and the unclear financing.

There is also skepticism among experts that the database will increase the number of donors as hoped. The Secretary General of the German Society for Surgery (DGCH), Thomas Schmitz-Rixen, said: “Just because something can now be entered in a register does not automatically mean that more people are willing to donate organs.”

From DSO’s Rahmel’s point of view, the new system is still “a big gain” because the information in the register can be accessed quickly and stored securely.

How great is the need for donor organs?

The number of people on the waiting lists for a transplant is currently around 8,400 – which is many times higher than the number of organs available. According to the European Eurotransplant Association, a new kidney is needed most often – it currently affects 6,500 people. Around 870 people are waiting for a new liver and 690 are hoping for a heart donation.

According to DSO figures, 965 people donated one or more organs after their death last year. A total of 2,877 organs were transplanted. Although the number increased compared to 2022, Germany is far behind in an international comparison.

With information from AFP, KNA and epd