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“