The purpose of the Scientific Foundation SPIROSKI – Marrow Donor Registry [SFSMDR] is to introduce, maintain and advance the system in the non-governmental sector that enables the transplantation of bone marrow and peripheral blood cells from voluntary unrelated donors to patients with hematopoietic or other life-threatening diseases.
SFSMDR aims to continuously fulfill the following four missions:
The first mission of the SFSMDR is to help the understanding of unrelated transplantation in our country as an available life-saving treatment and to provide a suitable donor for the largest possible number of patients, mainly by introducing, maintaining and expanding a registry containing a sufficient number of HLA-typed donors. At the same time SFSMDR will develop the closest possible cooperation with bone marrow donation programs in other countries.
The second mission of the SFSMDR is to continuously develop procedures and standards that are optimal for both the donor and the patient. Regarding bone marrow donation issues, the SFSMDR will develop procedures and standards regarding the recruitment of bone marrow donors, the collection of bone marrow, and the care of the donor after collection. The procedures mentioned above must guarantee safety, comfort, trust and anonymity as well as a general good feeling for each donor. SFSMDR will always try to update the standards in line with the World Marrow Donor Association (WMDA).
The third mission of the SFSMDR is to participate in research projects focused on the clinical outcomes of unrelated donor transplantation. Both retrospective and prospective studies will be supported to determine the clinical success of unrelated donor transplants, the optimal procedure for performing unrelated transplants, and to evaluate the medical, psychological, and social impacts of bone marrow harvesting on the donor, as well as a possible baseline trial in the field. of transplant genetics and biology.
The fourth mission of SFSMDR is to enable equal, direct and rapid access to the bone marrow donor base for all citizens of our country as well as abroad, where the need for unrelated bone marrow transplantation is individually addressed. Special attention will be paid to eliminating financial barriers that may be encountered by patients requiring unrelated bone marrow transplantation.
SFS – Marrow Donor Registry is a self-sustaining structure in the non-governmental sector of our country that constantly raises awareness of stem cell donation, increases the number of potential marrow donors, achieves accredited results for donors, and as part of the World Marrow Donor Association (WMDA) provides the highest standards for donor registries for stem cells.
Establishment and Development of the Marrow Donor Registry [SFSMDR]
The establishment of the SFS – Marrow Donor Registry [SFSMDR] was part of the Civica Mobilitas Action Grants project. In accordance with their requirements, a complete project was developed which started on 01.05.2021 and lasts until 01.08.2022.
In June 2021, the development of the concept for the creation of the website began. This part consisted of collecting materials, photos and translating texts. The activity took place until October 2021. The website is prepared in Macedonian, English and Albanian languages.
Some of the topics we covered for the website are:
- Patients and families
- Blood cancer and blood disorders
- Understanding stem cell transplantation
- Preparation for stem cell transplantation
- Transplantation of stem cells
- Recovery: Body, Mind, Life
- Sex and relationships
- Support for parents, family and friends
- What do I need to know before applying?
- What happens after you join the stem cell registry?
- What will happen if you are asked to donate?
- What do donors say, what does giving look like?
- Are all questions answered?
- What if I can’t join?
In addition to these topics, we added the chapters “About us” and “Let’s save life”.
Creation of software to register in SFSMDR
In September 2021, the development of the online application for potential donors began. In this part, there was text preparation, a conversation about the parameters of the application, as well as research and formation of a form for data protection.
World Day of Donors
On 21.07.2021, the preparations for making a video for World Marrow Donor Day began. This event was organized by WMDA – World Marrow Donation Association.
This educational video involved multiple people, SFSMDR employees as well as SFSMDR ambassadors.
On 09/18/2021, this video was part of the WMDA Live Show – World Marrow Donor Day.
On September 18, 2021, the first press conference was held by the NFS-DRS, where the goals and activities of the organization were discussed, and educational videos for the World Marrow Donor Day were also shown.
On 04.10.2021, an agreement was signed for the allocation of a special line for donations with A1 Macedonia. Through this number, citizens donated 100 MKD each from a call for the purposes of the SFS – Marrow Donor Registry.
On 30.10.2021, a number was opened for donations from the “Telecom for Macedonia” foundation with an agreement concluded between the two foundations. The purpose of this number was the same as with A1 Macedonia.
Animated educational video
In September 2021, a text was prepared for an animated video “How to be a stem cell donor”. After making contacts and agreements, the video was published on the YouTube channel of the SPIROSKI Scientific Foundation on Aug 14, 2021 year.
In the video, the method of donating stem cells is explained in detail, that is, what will happen if you appear as a compatible donor.
Attached is the link to the animated video “How to be a stem cell donor“
Designing printed material
In November, the preparation and design of printed materials (envelopes, consents, sampling instructions) began.
The production of the materials started on 10.11.2021.
Installation and configuration of a telephone exchange
On 14.10.2021, an agreement was signed for the assignment of the use of a non-geographic number from the 0800 series, i.e. a free telephone number.
On 11/15/2021, a complete telephone installation was installed, which was assigned a free telephone number aimed at talking to potential donors and patients.
Business cooperation with Macedonian Post
After discussions and consultations with other registries around the world, a decision was made to communicate with potential donors, i.e. the collection of material (cheek swab) through the state post office.
On 20.10.2021, a business cooperation agreement was signed between the Scientific Foundation SPIROSKI and AD for postal traffic “Posta na Severna Macedonia” in state ownership – Skopje.
In one of them, the Scientific Foundation SPIROSKI was assigned a postal box (FAH) in which the samples from the potential donors would then arrive.
Production of barcodes
When designing the software for registering potential donors in September 2021, software was designed in parallel to generate barcodes for each registered potential donor.
On 07.12.2021, the necessary equipment for the generation and printing of barcodes (printers, ribbons, reels, reader) was provided.
On 10.12.2021, Scientific Foundation SPIROSKI attended the first workshop on transplantation of solid organs/tissues and bone marrow in the Republic of North Macedonia.
The lectures were conducted by the University Clinic for Hematology, Faculty of Medicine, Skopje and other institutions involved in this field.
Educational video "Cheek swab kit"
On 23.12.2021, a video was recorded and edited for the YouTube channel of the Science Foundation SPIROSKI “Cheek Swab Kit”. In this video, the procedure of taking a swab at home is shown in detail.
Attached is the link to the video “Cheek Swab Kit“