About the Fund
Please help us to recruit new bone marrow donors! We all have a lot of different bloods mixed in our veins, which makes us ever closer to each other. The more donors being listed in bone marrow database, the more lives can be saved.
When we are many we can move mountains!
Thank you for being with us!
Yuri Ioffe Head of Karelian Registry of Unrelated Donors of Hematopoietic Stem Cells
You are eligible to become a bone marrow donor if you are aged between 18 and 50 and your health is good. At the moment Russia does not have an officially published list of contraindications to donating bone marrow, however they mostly coincide with the contraindications to donating blood.
How to Become a Bone Marrow Donor
To become a member of our Registry you need to:
- fill in the necessary forms;
- provide a buccal swab sample for HLA-typing.
If you want to become a donor, write to: email@example.com (write “I want to be a donor” in the subject line).
After HLA-typing results have been received the donor gets an individual code and he or she is entered into the database. This fact is confirmed by a text message sent to the donor’s mobile.
The main condition of entering the Registry is that the donor should be willing to render gratuitous help to any patient requiring donor hematopoietic cells. The Registry finds donors for patients notwithstanding their country of residence, their ethnic, religious, racial or other differences. It is essential to understand that a lot of time may pass between the moment when you become a member of the Registry and the time when you are actually asked to help as the patient who needs your help may arrive years, or even decades, later.
Bone marrow cells are located in different bones but, mainly, in pelvic bones. Besides, they can also be found in peripheral blood, in umbilical cord blood of new-born babies and in placenta.
There are two potential sources of obtaining donor cells:
- bone marrow or blood of an adult;
- umbilical cord blood and placenta.
At the moment bone marrow cells are obtained in two ways: from bone marrow and from blood.
1. Obtaining Cells from Peripheral Blood
The procedure takes place in a collection centre. At first, a special substance called colony-stimulating factor is administered to a donor for four days by means of subcutaneous injections; this causes hematopoietic cells to move from the bone marrow into the blood stream. On the fifth day the donor gets a catheter installed in his or her vein. He or she is then connected to the blood separator, a special device that collects hematopoietic cells. During the procedure the donor’s blood several times passes through the separator which collects hematopoietic cells into a special bag. The procedure lasts from five to seven hours; during this time the donor rests relatively still (however he or she can read, watch TV). Cell collection procedure is painless and causes no discomfort to the donor who can go home several hours after the cell collection procedure is over.
2. Obtaining Cells from Bone Marrow
This procedure also takes place in a collection centre. Bone marrow is obtained from iliac and sacral bones and is collected into a special plastic bag. The procedure is performed under general anaesthesia in an operating room and lasts, on average, from 40 to 50 minutes. When it is over the donor remains in the clinic for several hours under medical care, after which he or she may go home.
Whatever the collection method, not more than 200—300 ml of hematopoietic cells are taken from a donor, which is quite enough for bone marrow transplantation. The donor’s blood formation takes 7 to 10 days to get restored.
The Registry aims to provide high-quality and safe donor bone marrow cells, while preserving the health and well-being of donors. The donation is a medical procedure which, as any medical procedure, may involve certain risks. However more than 99% of donors face no complications after donation. The registry employees including doctors evaluate all donors’ reactions connected with bone marrow cells donation. Apart from that donors can always get the necessary advice if they have questions or doubts regarding donation.
Obtaining Cells from a Vein
The administration of colony-stimulating factor may lead to fever and pains in bones and muscles that can be relieved by anti-inflammatory drugs and disappear when the substance is no longer administered.
Obtaining Cells from Bone Marrow
There is some anaesthesia-related risk but it is no different from the risk caused by anaesthesia during any surgical operation (be it dentistry or surgery). There are very few chances for a healthy person to develop serious complications. Sometimes donors may be nauseated; bruises may appear in puncture spots. After the procedure there may be certain discomfort around bone punctures. Usually they are not relieved by painkillers.
Donor Search Stages
Searching for an unrelated donor of hematopoietic cells is quite a difficult process consisting of a number of stages that should be observed to make sure positive results are achieved. The steps that should be undertaken before hematopoietic stem cells are donated and transplanted successfully are briefly outlined below.
Stage 1. To begin looking for an unrelated donor of hematopoietic stem cells you should send a filled-in form of the Primary donor search request. Providing the register with the results of high resolution HLA typing (A, B, C, DRB1, DPB1 and DQB1 loci) is a mandatory condition for a donor search. After the request is received, a preliminary search for donors is conducted. The results are sent to the requesting transplantation/ search centre. It contains information on all donors, both pre-compatible and partially compatible with the recipient.
Stage 2. The transplantation/ search centre selects donors that seem compatible and requests further HLA-typing of such donors on the missing loci or with higher resolution. The registry conducts the additional HLA-typing, with the results sent to the transplantation/ search centre.
Stage 3. Transplantation / search centre selects compatible donors and carries out "confirmatory HLA-typing" of these donors. Its goal is to double-check the donor-recipient compatibility. "Confirmatory typing" is conducted in the laboratory of the transplantation centre or in an independent laboratory chosen by the transplantation centre. In addition, at this stage the donors are checked for transmissible infections.
Stage 4. The transplantation centre selects the donors for the donation procedure. The list of the selected donors is sent to the registry by the transplantation centre. The donors' medical examination is arranged by the registry. The examination results are communicated to the transplantation centre. In case there are no contraindications and if the donor agrees to the donation, the transplantation centre and the registry decide on the following important points: the transplantation date, the donation date, the clinic where donor cells will be collected (the so-called "collection centre"), the necessary amount of the donated material and the method of the donor cells transportation to the transplantation centre. At all activation and examination stages, the registry receives the donor's written consent for each manipulation. At the same time, the donor may, at any stage, refuse to go on with the donation at their own discretion. Usually two or more donors are prepared for the donation; others may be used as a backup if the primary donor should withdraw or if he or she should fall victim to force majeure circumstances.
Stage 5. The donor arrives at the collection centre where donor hematopoietic cells are collected. After this a special courier delivers the finished donor product to the transplantation centre. Immediately after the donation the donor remains in the collection centre under medical care. Subsequent medical care for the donor is organized by the registry. The donor's health is monitored for at least 3 years after the procedure.
It should be pointed out that the stages of finding donors described above are generally outlined and may vary in each particular case as the process of the search and selection of a donor is complex and individual. Besides the transplantation centre can at any stage change the tactics of the donor search notifying the registry and, if necessary, the collection centre.
At each stage of the search the registry bears financial costs which are to be compensated by the transplantation or search centre. However since the result of the donor selection is unknown till the very end of the process we adhere to the principle of gradual reimbursement of the Karelian Registry's expenditures, stage by stage. The only mandatory condition is that the costs of the procedures that have been initiated should be reimbursed, even though there may be situations when a transplantation centre for some reason refuses to continue the search for a donor.
The cost of the donor search is individual in each case. Apart from additional HLA-typing tests, the cost of the search includes the costs of the transmissible infections check, medical examination of the donor before and after the donation, the collection of donor cells, the cost of the donor's insurance, the costs of travelling to the place of the donation and back. Thus, the total amount of costs will be different in each particular case. However, we estimate that the total costs of finding a donor in the Karelian Registry will be 25-30% lower than the costs of recruiting a foreign donor.
However, we believe that the main goal of our work is to do our best to find a compatible donor for the recipient.
Assessment of a Donor's Health.
World Marrow Donor Association (WMDA) has developed international donor medical suitability guidelines. The latest version of these guidelines is published here: https://wiki.wmda.info/index.php?title=Main_Page
Every year we look for bone marrow donors for 25 – 100 patients from Russia and other countries of the world. Two bone marrow transplantations have been conducted with the help of our donors. So far it is not so many but it already works and saves lives.
How to look for a donor?
The decision regarding the need for hematopoietic stem cells transplantation can only be made by a transplantation centre doctor. The donor search is performed by the search department of the transplantation centre or, at the request of the transplantation centre, by the Registry of unrelated donors of hematopoietic stem cells. If the search is successful, the final choice of the donor is only made by the transplantation centre doctor.
Therefore, the Registry only starts looking for donors after receiving a formal request for donor search, which can be sent by a transplantation clinic, a search centre, or a registry of hematopoietic stem cells donors.
We are willing to send you the form of the formal donor search request after you contact us. Please write to our e-mail: firstname.lastname@example.org or contact us by fax: +7-8142-765-897
Our Registry exists solely through private donations. We are very grateful for the assistance rendered to us. The information on our main expenses and operational costs is given below:
- 10 $ — purchasing of 2 sets for sampling of donors’ biological material;
- 70 $ — including 1 new donor into the Registry (information materials and documents for registration potential donors, biomaterial sampling, shipment, running tests);
- 700 $ — including 100 donors into the Registry (rental, information materials and documents for registration potential donors, biomaterial sampling, shipment, running tests).
You can donate to our fund through GlobalGiving or Blago.ru, or by means of Sberbank Online option at the website of Sberbank.
Donate by Text Messages
Send EB21 to the service number 3434 (for example for donation 200 rubles please send EB21+200 to service number 3434) or use the option given below:
Telephone: +7 8142 670 180
Fax: +7 8142 765 897
For donors — email@example.com (If you want to become a donor, write “I want to be a donor” in the subject line; if you want to inform us that some of your personal data have changed, write “Update my data” in the subject line); Other issues - firstname.lastname@example.org