Register of bone marrow donors in Russia

Bone marrow transplantation

Main article: Bone marrow transplantation

2023: Growth in the number of bone marrow donors by 2.7 times to 334 thousand people

The number of bone marrow donors in Russia by the end of 2023 reached 334 thousand people, which is 2.7 times more than a year earlier. Such data in April 2024 led the head. Federal Medical and Biological Agency (FMBA) of Russia Veronika Skvortsova

According to her, in 2023 the number of unrelated bone marrow transplants increased by more than 30% compared to 2022. Growth was achieved, in particular, thanks to the opening in December 2023 of the high-tech laboratory of the Kirov Research Institute of Hematology and Blood Transfusion, which is capable of performing more than 100 thousand typing per year. As a result, for three out of four patients in need of unrelated bone marrow transplantation, it is possible to find a suitable donor in Russia, the head of the FMBA noted.

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We are faced with the task of expanding the register by about 100 thousand potential donors per year. By the end of 2025, it is necessary to reach an indicator of at least 500 thousand donors in the register, this will provide about 90% of the need for unrelated transplants in Russia, - said Skvortsova (quoted by TASS).

At the end of December 2023, Deputy Prime Minister Tatyana Golikova said that the projected need for bone marrow and hematopoietic stem cell transplantation is about 5 thousand per year, of which 650 cases per year are unrelated donors. She also noted that back in 2021, it was impossible for more than half of patients to find a donor in Russia, therefore, on behalf of the President of the Russian Federation, a Russian federal register of bone marrow donors was created, all the previously disparate databases of both state organizations and non-profit local registers were loaded into the system.^[1]

2022

Deputy Prime Minister Golikova: The number of bone marrow donors in Russia increased 2.6 times over the year

By the end of 2023, there are 300,100 people in the Federal Register of Bone Marrow and Hematopoietic Stem Cell Donors, which is 2.6 times more than a year earlier. This was RUSSIAN FEDERATION Tatyana Golikova announced by the Deputy Prime Minister on December 7, 2023 during the summing up of the first year of work of the Federal Register of Bone Marrow Donors.

According to her, by the end of 2023, the projected need for bone marrow and hematopoietic stem cell transplantation is about 5 thousand per year, of which unrelated donors - 650 cases per year.

By the end of 2023, there are 300,100 people in the Federal Register of Bone Marrow and Hematopoietic Stem Cell Donors

Currently, work to attract new donors has been debugged nationwide, youth movements and law enforcement agencies are actively involved, "said Veronika Skvortsova, head of the FMBA (operator of the unified Federal Register of Bone Marrow Donors), on December 7, 2023, adding that the annual recruiting potential of Russian donors exceeds 100,000 people.

Anyone aged 18 to 45 years and weighing more than 50 kg can enter the bone marrow donor database. Another condition is the absence of chronic diseases.

At the same time, it is very difficult to find a suitable donor for the recipient, since you need to look for a person with the same HLA genotype. Sometimes cells of a close relative are suitable, but in this case, the probability is only 50%. Therefore, often in hospitals you have to contact a bank of bone marrow donors. People with identical non-related brain cells are called genetic twins.

In September 2023, Ekaterina Kuznetsova, executive director of the Siberian Bone Marrow Donor Register, said that every year about 1.5-1.7 thousand bone marrow transplantation operations are performed, while it requires about 5 thousand people a year.^[2]

Federal register of bone marrow donors launched in Russia

A federal register of bone marrow and hematopoietic stem cell donors, donor bone marrow and hematopoietic stem cells, bone marrow recipients and hematopoietic stem cells has been launched in Russia. This was announced by the Federal Biomedical Agency (FMBA) on September 1, 2022.

On September 1, 2022, the connection of suppliers and users of federal register information was implemented, to which information about potential donors can be transmitted by typing laboratories, and transplant centers can initiate the search for a donor for their patients.

Federal register of bone marrow donors launched in Russia

The connection of all organizations, both suppliers and users of federal register information, is carried out online and takes no more than one day, the FMBA said.

The data of the existing state local registers are exposed to the bone marrow donor register. By the beginning of September 2022, more than 112 thousand records of potential donors were made.

The Agency conducts an active information campaign on the donation of bone marrow and hematopoietic stem cells, ensuring the availability of this information both for Russian citizens, volunteer and youth organizations, as well as for laboratories conducting typing of human tissues, and transplant centers. The Federal Register created by the FMBA of Russia will significantly increase the number of potential bone marrow donors and the results of their typing. This will significantly increase the likelihood of finding a donor for a particular patient, which is extremely important for its cure, "said Veronika Skvortsova, head of the FMBA of Russia.

The agency added that the information system of the register created by FMBA meets all requirements for the protection and security of data, including personal ones.^[3]

Putin signed a law on the creation of a register of donors and recipients of bone marrow

In early May 2022, the president Russia Vladimir Putin signed a law creating a register of bone marrow donors and recipients. Document on improving the legal regulation of donation bone marrow transplantation and hematopoietic stem cells.

The law, in particular, establishes the creation at the federal level of a register of bone marrow donors and hematopoietic stem cells, the donor organs themselves and their recipients. The procedure for maintaining the register will be determined by the Government of the Russian Federation.

Putin signed a law on the creation of a register of donors and recipients of bone marrow

Also, the new law enshrines the rights of donors: they will be able to undergo free medical examination, treatment and rehabilitation, receive compensation for travel to and from the bone marrow fence. 33 million rubles are planned to ensure these expenses.

It is specified that transplantation of human organs and tissues is carried out with the written voluntary consent of an adult capable living donor and recipient. If the recipient has not reached the age of majority or is not capable, consent must be signed by his parent or legal representative.

The document emphasizes that human organs or tissues cannot be a subject of sale. In addition, the adopted amendments introduce restrictions regarding the presumption of consent to the removal of organs or tissues for transplantation. Such a seizure from the deceased is not allowed if the medical organization is informed that during his lifetime the person himself or his representatives declared their disagreement with these actions.

As follows from the financial and economic justification of the bill, its implementation will require 2.91 billion rubles in 2021-2023. The main part of the expenses is provided for typing the main complex of histocompatibility of new donors for inclusion in the register - 1.66 billion rubles (552 million rubles annually).

The law will come into force on September 1, 2022.^[4]

FMBA assigned by the operator of the federal bone marrow donor register

The Federal Biomedical Agency (FMBA) has been appointed by the Government of the Russian Federation as the operator of the federal register of bone marrow donors, which became known in February 2022. The agency has developed rules for maintaining this all-Russian database with protected information about citizens who are ready to become potential donors and passed tests to determine compatibility.

Medical organizations that have a license for transplantation of human organs and tissues, including bone marrow and hematopoietic stem cell transplants, as well as for locus typing of the main histocompatibility complex system, will have to enter data into the register.

FMBA assigned by the operator of the federal bone marrow donor register

The database is supposed to include the name, date of birth, gender, place of birth and address of residence, the series and number of the passport, the date of inclusion in the register, the results of the medical examination, information about the collection and transfer of cellular material, the consequences of this and the incentives of donors. Similar information will be entered for each recipient of organs or tissues.

Donor and recipient profiles should appear on the register within 10 days of receiving all data about them, including typing information and medical examination results. Users of the information, in addition to these medical organizations, will be the Ministry of Health, FMBA, interested authorities and individuals.

According to a study by the Tinkov Family Foundation, the Higher School of Economics, the Center for Strategic Research and Economic Partnership "New Economic Growth," in all domestic registers of bone marrow donors and hematopoietic stem cells (GSK) in 2021 there were about 160 thousand people, of which 106 thousand were listed in the combined database of local state registers.^[5]

2021: Creation of a federal bone marrow donor register

On April 8, 2021, Prime Minister Mikhail Mishustin, speaking at his meeting, announced the upcoming launch in Russia of a federal register of bone marrow donors.

This is a detailed database that will be constantly updated. Using it, specialists will be able to quickly find the right donor for their patients, not only in their own region, but throughout the country, - explained the Prime Minister of the Russian Federation (quoted by TASS Information Agency of Russia).

According to him, the road to volunteers to the place of transplantation and back will be paid at the expense of the budget in the order that the government will establish.

He also noted that thousands of patients need a bone marrow transplant in the country, including children who often allow a bone marrow transplant to forget about a terrible disease forever

Mikhail Mishustin announced the creation of a federal register of bone marrow donors

But finding the right donor is not an easy task, and the bill, it happens, goes on for days... They come to the rescue when especially needed, give hope for recovery to seriously ill patients. It is important that nothing threatens their health. The donor needs to know everything about possible complications due to the upcoming operations, "Mishustin said.

The prime minister stressed that donors will have the right to medical examination, treatment and rehabilitation. Donors need to know everything about possible complications due to the upcoming operation, he explained.

The Ministry of Health published the corresponding bill back in July 2019. It was proposed to create a single register of donor bone marrow and hematopoietic stem cells, as well as bone marrow donors.

It was planned to receive about 2.9 billion rubles for the implementation of the provisions of the project in 2021-2023, of which 1.66 billion rubles for the inclusion of new donors in the combined database. However, until April 2021, the implementation of this project did not budge.^[6]

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