ANNUAL REPORT 2 THE NORWEGIAN BONE MARROW DONOR REGISTRY Irene Andersen and Susanne H. Strandman Nielsen from The Norwegian Bone Marrow Donor Registry deliver an amusing speech when celebrating the registry s 1 years anniversary on June 15. Åge Danielsen, Director of Rikshospitalet Univ. Hospital, Torstein Egeland, Head of The Norwegian Bone Marrow Donor Registry, Jan Petter Blomhoff, Head of The Med. Dept., and Olle Ringdén, guest lecturer from Huddinge Univ. Hospital, Stockholm, Sweden, listen cheerfully. For more pictures, see the registry's web site www.nordonor.org. The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet University Hospital N-27 Oslo Norway 1
SUMMARY The Norwegian Bone Marrow Donor Registry (NBMDR) was established in 199 after a donation from The Norwegian Cancer Society. In 2, The Norwegian Cancer Society has continued to support NBMDR, and the society recently renewed its support for another three years. NBMDR celebrated its 1 years anniversary on June 15, 2. NBMDR is located at the Institute of Immunology, Rikshospitalet University Hospital, Oslo (head of the institute: professor Erik Thorsby, MD). The institute is 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, Institute of Immunology 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, 2, 19,343 HLA-A and -B-typed active donors were in the registry. 17,17 (88.4%) were also HLA- DR typed, mostly by genomic intermediate or high resolution typing techniques. 45 donors were withdrawn in 2 due to high age (14) or other reasons (31). Search for donors in NBMDR Donor search requests for 3,64 patients were sent to NBMDR in 2. 456 donors were evaluated for 324 patients with further HLA-typing or confirmatory testing (CT). 26 NBMDR donors donated bone marrow or peripheral blood stem cells (PBSC) in 2. All were first donations. Lymphocytes for post-transplant donor lymphocyte infusion (DLI) were donated once in 2. Search for donors for Norwegian patients In 2, search requests for 25 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 unrelated HLA matched donor has been performed for 6-7% of the patients for whom an unrelated donor search was initiated. In 2, 2 Norwegian patients were transplanted with marrow from an unrelated HLA matched donor from Germany (6 donors), England (3 donors), Sweden, Wales and USA (2 each), and Australia, Canada, France, Italy, and Norway (1 each). In addition, a patient received PBSC from an American donor for treatment of graft failure. By the end of 2, 143 Norwegian patients have been transplanted with bone marrow from an unrelated donor. NBMDR and the Norwegian blood banks An annual course for personnel from all blood banks in Norway was arranged June 16. Later, one newsletter 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. 2
STAFF MEMBERS RECRUITMENT The following persons were engaged in NBMDR by the end of 2 and were paid by The Norwegian Cancer Society: Irene Andersen Head Med. Lab. Techn. Gro Gundersen Med. Lab. Techn. Mette Clausen Med. Lab. Techn. Sofie Birkelund Med. Lab. Techn., part time Number of donors 25 2 15 1 5 Unni Jægård Donor Center Coordinator, part time Susanne H. Strandman Nielsen 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, Institute of Immunology; Lorentz Brinch, MD, Senior Consultant in Hematology, Med. Dept.; Professor Sverre O. Lie, MD, Children's Dept.; and Professor Bjarte G. Solheim, MD, Institute of Immunology, - all at Rikshospitalet University Hospital - are advisors to NBMDR. In addition, Lorentz Brinch, MD, and Geir E. Tjønnfjord, MD, Rikshospitalet University Hospital, and Terje Dybvik, MD, Volvat Med. Centre (NBMDR s collection centre), co-chair or conduct the donor information sessions for Norwegian donors who have been selected for bone marrow donation. Anne-Grethe Fjellman and Elly-Ann Ingilæ are coordinating the collaboration with the transplant physicians at Rikshospitalet University Hospital, and Anne Marie Skaug cooordinates marrow collections at Volvat Med. Centre. Medical and Managing Director of NBMDR is Torstein Egeland, MD, Senior Consultant in Immunology and Head, Stem Cell Research Group, Institute of Immunology, Rikshospitalet University Hospital. 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, 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. 3
SEARCH FOR DONORS IN NBMDR Number of searches 24 21 18 15 12 9 6 3 Fig. 2. Annual and accumulated number of donor search request. Average number of monthly searches in 2 was 33. PATIENTS WITH ONE OR MORE ACTIVATED DONORS IN NBMDR Number of patients 2 1 8 1 6 1 4 1 2 1 8 6 4 2 1991 2 Fig. 4. Annual and accumulated number of patients for whom one or more NBMDR donors were activated. Donors were activated for on average 27 new patients per month in 2. ACTIVATION OF DONORS IN NBMDR NUMBER OF DONORS ACTIVATED PER PATIENT Number of activated donors 3 2 5 2 1 5 1 5 Number of patients 1 1 1 1991 2 Fig. 3. Annual and accumulated number of activated donors (HLA typing or blood sample shipment). 38 donors were on average activated per month in 2. 1 1 3 5 7 9 11 13 Number of donors per patient 15 17 Fig. 5. Number of activated donors per patient vs. number of patients for whom one or more donors were activated. 4
DONATIONS FROM NBMDR Number of first donations 16 14 12 1 8 6 4 2 2 2 19 8 1 9 11 Fig. 6. Annual and accumulated number of NBMDR donors who have donated marrow or PBSC (first donation only). DONATIONS PER YEAR PER 1, DONORS 3 16 46 19 65 28 93 117 24 26 143 2 DONATIONS FROM NBMDR TO PATIENTS IN DIFFERENT COUNTRIES Countries USA Germany Norway France Sweden Denmark Canada Great Britain Spain Australia Austria Belgium Switzerland Cuba Ireland Italy Netherland South Africa Number of donations 1 2 3 4 5 First donation Second donation Fig. 8. Number of donations (marrow and PBSC, first and second donation) from NBMDR to individual countries. Relative number of first donations 1,8 1,6 1,4 1,2 1,,8,6,4,2 LOCATION OF BLOOD BANKS WITH DONORS WHO HAVE DONATED MARROW OR PBSC Polar circle, 2 Fig 7. Number of stem cell donations /first donation) per 1, donors per year in the registry (marrow or PBSC). Oslo 5 km Fig. 9. Localization of the blood banks. 5
Table 1. Name of blood bank cities as shown in fig. 9. Blood bank city Number of donations Oslo 58 Bergen 13 Tønsberg 8 Molde 7 Trondheim 6 Kristiansand 4 Askim 3 Fredrikstad 3 Haugesund 3 Levanger 3 Lillehammer 3 Minnesund 3 Tromsø 3 Bodø 2 Bærum 2 Halden 2 Hammerfest 2 Narvik 2 Nordbyhagen 2 Skien 2 Stavanger 2 Ålesund 2 Arendal 1 Drammen 1 Førde 1 Gjøvik 1 Hamar 1 Hønefoss 1 Kristiansund 1 Mandal 1 Moss 1 Odda 1 Orkanger 1 Sandnessjøen 1 Sarpsborg 1 Tynset 1 Volda 1 SEARCH FOR DONORS FOR NORWEGIAN PATIENTS In 2, Institute of Immunology initiated search for 25 Norwegian patients in NBMDR and other registries. By the end of the year, seven of these patients had been transplanted with an HLA matched unrelated donor, and more are awaiting transplantation in 21. During the few last years, 6-7% of the patients for whom a donor search was intitiated were actually transplanted (table 2). In addition, HLA matched donors were 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 Norwegian patients. By the end of 2, a total of 143 patients had been transplanted with an unrelated donor. The donors who have donated marrow to Norwegian patients by the end of 2 came from 16 different countries (fig. 1). Countries England USA Germany Norw ay France Australia Sw eden Netherlands Canada Italy Number of donations 5 1 15 2 25 3 35 Wales Belgium Sw itzerland Austria Ireland Singapore Fig. 1. Countries which have provided marrow to Norwegian patients. 6
Table 2. 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. pat. 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 21 7 5 44 27 17 63 6 126 479 32 22 69 2* 6 86 25 14 56 Result: 23 143 /5 62 *Many of the patients for whom search was initiated in 2 still remain to be transplanted in 21 (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. haploidentical donors in the extended family were eventually identified or the patient's treatment protocol was re-evaluated. These patients have not been excluded from this table. ADDENDUM Mailing address: The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet, The National Hospital N-27 Oslo NORWAY Visiting address: Sognsvannsveien 2, Oslo International calls: +47-237-35 Inst. of Immunology +47-237-377 NBMDR Secretariat +47-237-3771 Unni Jægård, Donor Center Coord. +47-237-3772 Irene Andersen, Head Med. Lab. Techn. +47-237-377 Susanne H. Strandman Nielsen, Transpl. and Donor Center Coord. +47-237-1344 Ranveig Østrem, Med. Lab. Techn. +47-237-1379 Torstein Egeland, MD; Med. Dir. International fax: +47-237-378 MCI Mail: 22-6537 (Donor Center Coord., NBMDR) 22-7934 (Transplant Center Coord., Rikshospitalet) NBMDR Web site: http://www.nordonor.org Email addresses: The Norwegian Bone Marrow Donor Registry: nordonor@rikshospitalet.no Irene Andersen: irene.andersen@rikshospitalet.no Torstein Egeland: torstein.egeland@labmed.uio.no Susanne H. Strandman Nielsen: susanne.strandman.nielsen@rikshospitalet.no Unni Jægård: unni.jaegard@rikshospitalet.no Accounts and Invoices: Økonomipartner AS Gullhaugveien 7 Postboks 433 Torshov 41 Oslo Tel: +47-2258-45 Fax: +47-2258-451