The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet University Hospital Oslo, Norway Annual report 22
SUMMARY The Norwegian Bone Marrow Donor Registry (NBMDR) was established in 199 after a donation from The Norwegian Cancer Society. The Norwegian Cancer Society continues to support NBMDR. NBMDR is located at the Institute of Immunology, Rikshospitalet University Hospital, Oslo (head of the institute: professor Erik Thorsby, MD). The institute s HLA typing operations are accredited by European Federation of Immunogenetics (EFI). NBMDR is the only bone marrow donor registry in Norway. The NBMDR donors are recruited from blood banks throughout the country. In addition to running the donor registry, NBMDR also performs donor searches for Norwegian patients. NBMDR is a member of the World Marrow Donor Association (WMDA) and the European Donor Secretariat (EDS). NBMDR regularly submits its donors to Bone Marrow Donors Worldwide (BMDW). National Marrow Donor Program (NMDP), the largest US donor registry, accredited Rikshospitalet as a transplant center in and as a collection center in. NBMDR was accredited as a donor center in. HLA typing of donors By December 31, 22, 21,44 HLA-A and -B-typed active donors were in the registry. 18,936 (9.%) were also HLA-DR typed, mostly by genomic low or intermediate resolution typing techniques. 62 donors were withdrawn in 22 due to high age (33) or other reasons (29). Search for donors in NBMDR Donor search requests for 3,294 patients were sent to NBMDR in 22. 343 donors were evaluated for 28 patients with further HLA-typing or confirmatory testing (CT). 24 NBMDR donors donated bone marrow or peripheral blood stem cells (PBSC) in 22 (first donation). In addition, 5 donors donated a second time (to the same patient). Lympho cytes for posttransplant donor lymphocyte infusion (DLI) were donated twice in 22 (one patient with myelodysplastic syndrome, and one with acute myelogenous leukemia). Search for donors for Norwegian patients In 22, search requests for 29 new Norwegian patients were made to NBMDR and to registries in Europe, Canada, Australia/New Zealand, NMDP, far east Asia, and South Africa. The data file of BMDW is also checked for every search initiated, and it is regularly used for every patient for whom a donor has not been identified. During the last few years, transplantation with an unre lated HLA matched donor has been per formed for approx. 7% of the patients for whom an unrelated donor search was initiated. In 22, 17 Norwegian patients were transplanted with marrow from an unrelated HLA matched donor from Germany (8 donors), USA (4 donors), Norway (2 donors) and Great Britain, Italy and Switzerland (1 donor each). By the end of 22, 172 Norwegian patients have been transplanted with bone marrow from an unrelated donor. NBMDR and the Norwegian blood banks The annual course for personnel from all blood banks in Norway was not arranged in 22. Two newsletters was mailed to all blood banks. In addition, the large blood banks (Bergen, Oslo, Tromsø, and Trondheim) have access to a program for searching for HLA-compatible platelet donors among their own blood donors. The blood banks continue to recruit new donors. The WMDA 4 th Int. Donor Registry Conference 22 was hosted by NBMDR In May 29 - June 1, 22, NBMDR hosted the 4 th int. Donor Registry Conference at Soria Moria Hotel and Conference Center in Oslo. There were 175 particpants from 3 countries in Europe, North- and South- America, Australia, Africa, and Asia.
STAFF AND COLLABORATORS The following persons were engaged in NBMDR by the end of 22 and were paid by The Norwegian Cancer Society: Irene Andersen Head Med. Lab. Techn. Bente Woldseth Med. Lab. Techn. Kirsti Bryn Med. Lab. Techn. Siri Flom Med. Lab. Techn., part time Volvat Med. Centre. Ruby Skogheim coordinates the collection of peri pheral blood stem cells and lymphocyte collections at the Section of Cell Therapy, Institute of Immunology, Rikshospitalet University Hospital. Medical and Managing Director of NBMDR is Torstein Egeland, PhD, MD, Head, Section of Cell Therapy, Institute of Immunology, Rikshospitalet University Hospital. RECRUITMENT 24 2 Annual number Accumulated number Kristina Folvik Med. Lab. Techn. Marit Opsahl Engineer Unni Jægård Donor Center Coordinator, part time Number of donors 16 12 8 4 Sidsel M. Strøm Donor and Transplant Center Coordinator 1989 1991 Jenny Smaadal Donor and Transplant Center Coordinator Fig. 1. Annual and accumulated number of new donors. All donors are recruited from blood banks throughout the country. Professor Erik Thorsby, MD, PhD, Institute of Immunology; Lorentz Brinch, MD, PhD, Senior Consultant in Hemato logy, Med. Dept.; Professor Sverre O. Lie, MD, PhD, Children's Dept.; and Professor Bjarte G. Solheim, MD, PhD, Institute of Immunology, - all at Rikshospitalet University Hospital - are advisors to NBMDR. In addition, Medical doctors at the Section of Blood Diseases, Rikshospitalet University hospital, and Terje Dybvik, MD, Volvat Med. Centre (NBMDR s collection centre), conduct the donor in formation sessions for Norwegian donors who have been selected for bone marrow donation. Anne-Grethe Fjellman and Anders Glomstein, MD, are coordinating the colla boration with the transplant physi cians at Rikshospitalet University Hospital, Anne Marie Skaug cooordinates marrow collections at HLA-TYPING OF DONORS All donors are typed serologically for the HLA-A, -B, and C molecules. SSP class I typing is performed if the serological typing for A or B is inconclusive. In addition, new donors are typed for HLA-DRB1 by oligonucleotide probing defining HLA-DR1, DR2, DR3, DR4, DR7, DR8, DR9, DR1, DR11, DR12, DR13, DR14, and DR13 specificities. In addition, some donors expressing DR4 are typed at allelic level. Upon request, NBMDR can perform high resolution genomic DRB1, DRB3, DRB4, DRB5, DQB1, and DPB1 typing as well as HLA class I genomic typing for HLA-A, HLA-B and HLA-C alleles.
SEARCH FOR DONORS IN NBMDR PATIENTS WITH ONE OR MORE ACTIVATED DONORS IN NBMDR 3 2 7 Number of searches 27 24 21 18 15 12 9 6 Annual number Accumulated number Number of patients 2 4 2 1 1 8 1 5 1 2 9 6 Annual number Accumulated number 3 3 1989 1991 1991 Fig. 2. Annual and accumulated number of donor search request. Average number of monthly searches in 22 was 275 (279 in ). Fig. 4. Annual and accumulated number of patients for whom one or more NBMDR donors were activated. Donors were activated for on average 23 new patients per month in 22 (26 in ). ACTIVATION OF DONORS IN NBMDR NUMBER OF DONORS ACTIVATED PER PATIENT 4 1 Number of activated donors 3 5 3 2 5 2 1 5 1 5 Annual number Accumulated number Number of patients 1 1 1 1 1 3 5 7 9 11 13 15 17 1991 Number of donors per patient Fig. 3. Annual and accumulated number of activated donors (HLA typing or blood sample shipment). 29 donors were on average activated per month in (33 in ). Fig. 5. Number of donors activated per patient vs. number of patients for whom one or more donors were activated.
DONATIONS FROM NBMDR 5 4 Bone Marrow PBSC Bone Marrow and PBSC Number of donations 2 18 16 14 12 1 8 6 Ann no first don Ann no sec don Acc no all don 3 2 1 2 22 4 2 2 8 9 11 16 19 28 24 26 2 24 17 22 Fig. 8. Annual number of donations of bone marrow and PBSC (second donation only). 22 was the first year with more PBSC second donations than marrow. Fig. 6. Annual and accumulated number of NBMDR donors who have donated marrow or PBSC. NUMBER OF MARROW, PBSC AND LYMPHOCYTE DONATIONS 3 25 2 15 1 5 Bone Marrow PBSC Bone Marrow and PBSC Number of LY donations 15 12 9 6 3 Annual no of LY don Acc no of LY don 2 22 2 22 Fig. 7. Annual number of donations of bone marrow and PBSC (first donation only). 22 was the first year with more PBSC first donations than marrow. Fig. 9. Annual and accumulated number of donations of lymphocytes.
DONATIONS PER YEAR PER 1, DONORS DONATIONS FROM NBMDR TO PATIENTS IN DIFFERENT COUNTRIES Relative number of first donation 1,8 1,6 1,4 1,2 1,,8,6,4,2, Fig 1. Number of stem cell donations (first donation) per 1, donors per year in the registry (marrow or PBSC). 2 22 Countries Number of first donations 15 3 45 6 75 USA Germany Norway Sweden France Denmark Great Britain Canada Australia Spain Austria Belgium Poland Switzerland Cuba Cypros Finland Ireland Italy Netherland South Africa First donation Second donation Fig. 11. Number of donations (marrow and PBSC, first and second donation) from NBMDR to individual countries. LOCALISATION OF BLOOD BANKS WITH DONORS WHO HAVE DONATED MARROW OR PBSC Polar circle Oslo 5 km Fig. 12. Localisation of the blood banks.
Table 1. Name of blood bank cities as shown in fig. 12. Blood bank city Number of first donations Oslo 67 Bergen 15 Trondheim 8 Tønsberg 8 Kristiansand 7 Molde 7 Tromsø 5 Askim 4 Fredrikstad 4 Minnesund 4 Skien 4 Halden 3 Hammerfest 3 Haugesund 3 Levanger 3 Lillehammer 3 Nordbyhagen 3 Stavanger 3 Ålesund 3 Bodø 2 Bærum 2 Hønefoss 2 Kristiansund 2 Narvik 2 Sandnessjøen 2 Arendal 1 Drammen 1 Førde 1 Gjøvik 1 Hamar 1 Harstad 1 Mandal 1 Mosjøen 1 Moss 1 Odda 1 Orkanger 1 Røros 1 Sarpsborg 1 Tynset 1 Volda 1 SEARCH FOR DONORS FOR NORWEGIAN PATIENTS In 22, Institute of Immunology initiated search for 29 Norwegian patients in NBMDR and other registries. By the end of the year, 8 of these pati ents had been transplanted with an HLA matched unrelated donor, and more are awaiting transplantation in 23. During the few last years, 65-75% of the patients for whom a donor search was intitiated were actually transplanted (table 2). In addition, HLA matched donors have been found for more patients, but these were not transplanted for various reasons (donors found in the extended family, the patient's treatment protocol was changed etc). Table 2 provides the number of donor searches and transplantation for Nor wegian patients. By the end of 22, a total of 172 patients had been transplanted with an unrelated donor. The donors who have donated marrow to Norwegian patients by the end of 22 came from 17 different countries (fig. 13). Countries Germany Great Britain USA Norway France Australia Sweden The Netherlands Canada Italy Wales Number of donations 5 1 15 2 25 3 35 4 Switzerland Belgium Austria Ireland Singapore Taiwan Fig. 13. Countries which have provided marrow to Norwegian patients.
Table 2. Annual number of Norwegian patients for whom a donor search was initiated and the number of patients who were transplanted. The number of donors available in Bone Marrow Donors Worldwide (BMDW) at the end of each year is also given. Search initiated Accumulated no. of donors in BMDW No. of patients for whom a search was initiated** No. of transplanted/retransplanted patients*** Rel. no. (%) of transpl. patients vs. no. of pat. in the need of a tx 1989 156 965 7 2 29 199 399 48 7 4 57 1991 736 463 12 4 33 1 237 923 11 5 45 1 72 363 22 15 68 2 339 766 23 15 /2 65 2 917 935 14 9 /1 64 3 752 646 2 15 /2 75 4 349 144 3 22 73 5 44 27 17 63 6 126 479 32 22 /1 69 2 6 86 25 15 6 7 522 21 27 19 7 22* 8 191 38 29 8 28 * Result: Total: 286 Total: 172 /6 Rel. no.: 57 *Many of the patients for whom search was initiated in 22 still remain to be transplanted in 23 (or later). **Not all patients for whom a search was initiated were in the end actually in the need of an unrelated donor transplantation, e.g. haplo identical donors in the extended family were eventually identified or th e patient's treatment protocol was re-evaluated. These patients have not been excluded from this table. ***A few patients have been, due to capacity problems at Rikshospitalet University Hospital, transplanted in a transplant center abroad. ADDENDUM Mailing address: The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet University Hospital N-27 Oslo NORWAY Visiting address: Sognsvannsveien 2, Oslo International calls: +47-237-35 Inst. of Immunology +47-237-377 NBMDR Secretariat +47-237-3772 Irene Andersen, Head Med. Lab. Techn. +47-237-377 Sidsel M. Strøm, Transpl. and Donor Center Coord. +47-237-3771 Jenny Smaadal Transpl. and Donor Center Coord. +47-237-1379 Torstein Egeland, MD; Med. Dir.. International fax: +47-237-378 NBMDR Web site: http://www.nordonor.org Email addresses: The Norwegian Bone Marrow Donor Registry: nordonor@rikshospitalet.no Irene Andersen: irene.andersen@rikshospitalet.no Sidsel M. Strøm: sidsel.strom@rikshospitalet.no Jenny Smaadal: jenny.smaadal@rikshospitalet.no Torstein Egeland: torstein.egeland@labmed.uio.no torstein.egeland@rikshospitalet.no Accounts and Invoices: Visma Services Gjerdrums vei 19 Postboks 433 Nydalen 42 Oslo Tel: +47-2258-45 Fax: +47-2258-451