Focus on qualitative growth

The registry continued to grow in 2023, though once again less rapidly than it had in past years. One reason for this is that motivating young people to register has become more challenging of late, particularly in the case of young men. However, another reason is that we have once again intensified our efforts to ensure that our records on registered persons are as up to date as possible. Correct contact information and information about a potential donor’s state of health and personal availability are important factors for the quality of a registry.

The Swiss registry listed 183,091 persons at the end of 2023, a 2.9 per cent increase over the 2022 total (177,849 persons). A total of 8,645 persons were added to the registry in 2023, somewhat more than the 2022 figure (8,138). Thus, the registry was able to stop the two-year decline in new registrations. There were 3,403 persons removed from the registry (2022: 2,005).

In addition to the regular removal of donors from the registry when they turn 60, people are also removed from the registry because a change in their health or private situation has made them unable to donate blood stem cells. The intensified dialogue aimed at strengthening donor commitment ensures that registered donors are regularly reminded about their pledge to donate blood stem cells and have occasion to review it, quickly and easily, and decide whether they wish to remain in the registry. This resulted in a significant increase in the percentage of removals compared to 2022.

The proportion of registrations that were initiated online fell somewhat compared to the previous two years. This was due to the fact that holding physical registration drives like those of the pre-pandemic years became possible again in 2023. Still, 83.4 per cent of all new registrations were carried out using the online questionnaire (2022: 87.7 per cent).

Registry: younger donors wanted

Swiss Transfusion SRC is striving to attain a balanced ratio of men to women in the registry of blood stem cell donors and to increase the number of younger people registering as donors. The percentage of “under 30s” is an indicator of substantial relevance for registries, because transplant material from young people is, for medical reasons, more promising in terms of patient outcomes.

Registry: In 2023, 35.9 per cent of the donors in the registry were men (2022: 35.7 per cent). The average age of registered donors was 37.8 (2021: 37.5), and 25 per cent of registered donors were under the age of 30 (2022: 26.8 per cent).

New registrations: At 39.5 per cent, the proportion of men among those newly registering was down slightly from the previous year’s 40.8 per cent (see chart). People under the age of 30 accounted for 62 per cent of those added to the registry in 2023 (2022: 65.7 per cent).

Collections: Male donors provided 59 per cent of all Swiss blood stem cell donations (2022: 69 per cent); 82.7 per cent of the donors from whom blood stem cells were collected were under the age of 36 (2022: 77.5 per cent).

Registration is open to people from the time they turn 17 until their 40th birthday. Upon reaching the age of 60, people are no longer eligible for stem cell donation and are removed from the registry.

male

female

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Strategie 19+: conclusions and outlook

The primary objective of Strategy 19+ was the qualitative improvement of the registry by focussing registration recruitment efforts on younger, preferably male, donors. For this reason, the maximum age for registration as a donor was lowered to 40.

This is what we achieved in the 2019–2023 period:

With Recruitment Strategy 19+, the number of initial collection procedures among Swiss donors was increased by 32 per cent.
In the area of new registrations, the registry can report a 17.6 per cent increase in the under-30 category and a 20.8 per cent increase in men.
Swiss Transfusion SRC is now able to contact any registered donor directly.
A uniform brand structure, marketing and communication that are all clearly focused on the defined objectives have been achieved.
The range of fundraising channels was expanded to include the benefactor programme.

What continues to pose a challenge:

Donor availability at the confirmatory typing stage – this figure fell to 51.3 per cent in 2023.
The number of new registrations per year – this fell to below the 10,000 persons in recent years.

The following adjustments will be made:

Young people under 30 will remain the target group for new registrations, however men will no longer be the target of more intense recruitment efforts. From a medical standpoint, there is no clear difference with regard to successful patient outcomes of blood cell transplantation between transplant material provided by male donors and that provided by female donors who have never been pregnant. A pregnancy can cause the formation of specific antibodies which, while completely harmless for the woman herself, may trigger adverse reactions in immunosuppressed patients.

Availability analyses are underway to determine whether certain segments or forms of registration might be associated with lower availability in the event of a concrete request to donate. Proactive efforts will be made to contact persons falling into such categories, raise their awareness of the importance of blood stem cell donation once again and remind them of their commitment to donate.

Recruitment events: 1,500 new registrations

The return to tissue-typing drives in private companies and schools gained further momentum in 2023, which was reflected in an increase in the numbers of new registrations from local drives. The focus was on raising the awareness of and registering young people – for instance at schools for army recruits and at the military academy in Bern, or at various companies. The “HSG against Leukaemia” event at the university in St. Gallen was once again a highlight: 120 potential stem cell donors registered there. As a bonus, the event was picked up by local media (including the private broadcaster Tele Ostschweiz TVO).

Businesses, above all, have been active in booking events structured along the modified concept with online talks and the option of subsequent online registration. The student organisation Marrow Switzerland has also been active on the registry’s behalf, carrying out various drives and other events at Swiss universities. In a new development, students can now do self-swab tests (cheek swabs) at the registration events. These events and others run by various athletic associations and private individuals throughout the country were responsible for a total of 1,500 new registrations.

Market research: study on blood stem cell donation

In cooperation with the market and social research company Link, we have conducted a survey among the Swiss populace on their knowledge about and attitude towards blood stem cell donation, as well as on their willingness to register or donate. The main finding: around half of those surveyed had little to no knowledge about blood stem cell donation. Four out of ten people are aware of the blood stem cell register; among them, women represent a substantial majority. The barriers to registration and donation are fairly high, with fears, concerns about health and a lack of information being the chief reasons cited. Willingness to donate one’s blood stem cells if they were found to be a match, and thus to save a life, is considerably higher than willingness to register. The study was intentionally conducted before the launch of the awareness-raising campaign (see next section). The survey will be repeated at the end of the campaign in order to measure its effect. This will allow the evaluation of the campaign as a whole, which is important as some of the measures it encompasses cannot be measured directly.

“Be the Match for Life’s Sake”: awareness-raising campaign

Various analyses of the decline in the numbers of registrations of new blood stem cell donors have shown that one reason that people do not register is that the level of knowledge about blood stem cell donation is too low. The new national campaign launched in the autumn is designed to change this: its aim is to generate greater visibility for blood stem cell donation and help recruit new donors. For this purpose, we have created a romantic world in which everything revolves around the perfect match, which, in the context of blood stem cell donation, is not supposed to be found on any of the many dating apps for a change.

Social media ads and advertising banners have been run on various websites. In addition, we are working with three influencers who have prepared information on the topic for their communities. In addition, posters were also put up (out-of-home and in fitness centres) and a cinema ad shown in various Swiss cinemas in October.

Testimonials: stories that life writes

Last year, as in the past, we had the privilege of sharing the moving stories of people who either received a transplant or donated their blood stem cells. Journalist Christoph Muggler’s video, aired on SRF Dok (only in German), reached a large number of viewers. Muggler documented, authentically and in detail, the collection of his own blood stem cells. He interleaves his own experience with his interview of Zora Largo, a blood stem cell donation recipient, to show the patients’ side of the story. In the video, their stories are supplemented by expert medical knowledge.

Testimonials help make the complex topic of blood stem cell donation understandable and make it individually relatable. They help motivate people to become active in the cause of blood stem cell donation. We wish to express our sincere gratitude to all “ambassadors” for blood stem cell donation for their time and their willingness to share their stories courageously and frankly.

Strengthening donor commitment: focus on quality of data and availability

In order to stay in regular contact with donors, we send out a quarterly newsletter containing information on various aspects of blood stem cell donation. In March, we wrote about how important it is that the data in a donor’s registry profile is up to date when a donation request comes in and asked that people report any change in contact details or health data as well as any plans to be away for longer periods. The response from among the 151,000 recipients of this request far exceeded our expectations: the donor centres received more than 8,000 emails.

In addition, we wrote to 50,000 registered blood stem cell donors once again in 2023, asking them to review their data electronically. In addition to their contact details, we asked them about their medical and temporal availability in the event of a concrete donation request. The group selected was made up of persons under the age of 35, as their youth makes them more likely to be requested for a possible donation. About 40% of the donors contacted verified their data and completed the availability check. The registry information update and availability check is repeated each year, with the aim of increasing the quality of the Swiss registry of blood stem cell donors by ensuring that contact and health data remains up to date.

These activities are also aimed at increasing availability in the event of a concrete request for a donation, as they help keep people aware of their own registration by repeatedly calling the topic to mind. Availability at the time of a concrete donation request was 51.3 per cent in 2023 (2022: 53.2 per cent). Among those giving a negative response when first contacted with a request, 26 per cent cited medical reasons for doing so; personal reasons were cited in 22.6 per cent of these cases (cf. chart).

A longer train trip from the place of residence to the collection site is sometimes reason enough to make a person decide against donating in Switzerland. A detailed analysis is underway to identify the specific segments, age groups and forms of registration that are associated with negative results.

Post-donation follow-up

On the basis of a mandate from the Federal Office of Public Health, Swiss Translation SRC is responsible for running a ten-year follow-up programme for all related and unrelated donors in Switzerland. This ensures that the donors’ health is protected. It also enables Swiss Transfusion SRC to gather detailed information that may help to increase the safety of future donors.

Once again, the questionnaire-based follow-up could be carried out in person or by email in 2023. A digital application that will simplify the follow-up process will be implemented at some point in the future.
In past years, 80 to 90 per cent of blood stem cell donors opted to participate in the voluntary follow-up programme. In 2023, 79 per cent did so (2022: 82 per cent); see chart (figures as per 18 Jan. 2024). This reflects a slightly downward trend.

Return rate, per cent

Number of questionnaires mailed (related and unrelated)

Number of questionnaires received (related and unrelated)