Annual Report 2004 The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet University Hospital Oslo, Norway Foto: Stig Weston

Transcription

1 Annual Report 24 The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet University Hospital Oslo, Norway Foto: Stig Weston

2 SUMMARY The Norwegian Bone Marrow Donor Registry (NBMDR) was established in 199 at the Institute of Immunology, Rikshospitalet University Hospital, Oslo, after a generous donation from The Norwegian Cancer Society. This society has been the main source of financial support since the establishment. The aim of NBMDR is to provide stem cells from an HLA identical unrelated donor to domestic and international patients in need of an allogeneic stem cell transplantation. The majority of the patients suffer from malignant blood disorders. NBMDR is part of an extensive international collaboration, representing more than 9.5 mill. HLA-typed volunteer donors and umbilical cord blood units. Through this collaboration, 21 Norwegian patients have since 199 been transplanted with stem cells from Norwegian (25) or international donor (176). In addition, NBMDR has provided stem cells to an additional 23 patients abroad. NBMDR and international relations NBMDR is the only bone marrow donor registry in Norway. It is located at the Institute of Immunology, Rikshospitalet University Hospital, Oslo (head of the institute: professor Erik Thorsby, MD, PhD). NBMDR is a member of the World Marrow Donor Association (WMDA). NBMDR regularly submits its donors to Bone Marrow Donors Worldwide (BMDW). National Marrow Donor Program (NMDP), the largest US donor registry, accredited Rikshospitalet University Hospital as a transplant center in and as a collection center in. NBMDR was accredited as a donor center in. In the fall of 24, a formal collaboration with the blood bank in Reykjavik, Iceland, was established. HLA typing of donors The Institute of Immunology, which is accredited by European Federation of Immunogenetics (EFI), performs HLA typing for NBMDR. In addition, Icelandic donors are also typed at the blood bank in Reykjavik, Iceland, as part of a mutual quality typing assessment and control program in Oslo and Reykjavik. By December 31, 24, 22,972 HLA-A and -B-typed donors were in NBMDR. 21,758 (95%) were also HLA- DR typed, mostly by genomic low or intermediate resolution typing techniques. 77 donors were withdrawn in 24 due to high age (47) or other reasons (3). Search in and donation by NBMDR Donor search requests for 52 patients were sent to NBMDR in 24. This is a significant reduction compared to earlier years, and is related to termination of the European EDS donor search system in the fall of donors were evaluated for 255 patients with further HLA-typing or confirmatory testing (CT). 17 NBMDR donors donated bone marrow or peripheral blood stem cells (PBSC) in 24 (first donation). No donors donated a second time. Lymphocytes for post-transplant donor lymphocyte infusion (DLI) were not donated in 24. By the end of 24, 228 donors had donated bone marrow or PBSC to domestic (25) and international (23) patients. In addition, 13 donors had donated twice. Search for donors for Norwegian patients In 24, search requests for 31 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 approx. 7% of the patients for whom an unrelated donor search was initiated. In 24, 15 Norwegian patients were transplanted with marrow (9) or PBSC (6) from an unrelated HLA matched donor from Germany (8 donors), USA (3), Great Britain (2), Denmark and The Netherlands (1 each). By the end of 24, 21 Norwegian patients have been transplanted with stem cells from an unrelated donor. NBMDR and blood banks NBMDR donors are recruited from blood banks throughout the country. In the fall of 24, Icelandic donors were also recruited in the Blood Bank of Reykjavik, Iceland. These donors were added to the donor pool of NBMDR. In addition to running the donor registry, NBMDR also performs donor searches for Norwegian patients. The annual course for personnel from all blood banks in Norway was arranged in January of 24. 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. All blood banks continue to recruit new donors. Page 1

3 STAFF AND COLLABORATORS The following persons were engaged in NBMDR by the end of 24 and were paid by The Norwegian Cancer Society: Irene Andersen Head Maiken Ring Bente Hopland Bente Woldseth Siri Flåm Sejla Hajdarevic Sidsel M. Strøm Donor and Transplant Center Coordinator Jenny Smaadal Donor and Transplant Center Coordinator Professor Erik Thorsby, MD, PhD, Head, Institute of Immunology; Lorentz Brinch, MD, PhD, Head, Adult Stem Cell Transplantation Program, Section of Blood Diseases, 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, and Volvat Medical Centre (NBMDR s collection centre), conduct donor information sessions and health examinations for Norwegian donors who have been selected for bone marrow or PBSC donation. Anne-Grethe Fjellman coordinates the collaboration with the transplant physicians at Rikshospitalet University Hospital, Anne Marie Skaug coordinates marrow collections at Volvat Med. Centre, and Ruby Skogheim coordinates the collection of PBSC and lymphocyte collections at the Section of Cell Therapy, Institute of Immunology. Head of NMBDR and its Medical Director is Torstein Egeland, PhD, MD, Head, Section of Cell Therapy, 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, some donors expressing DR4 are typed at allelic level. Upon request, NBMDR performs intermediate and high resolution genomic typing for A, B, C, DRB1, DRB3, DRB4, DRB5, DQB1, and DPB1. RECRUITMENT Number of donors Fig. 1. Annual and accumulated number of new donors. All donors are recruited from blood banks throughout the country. SEARCH FOR DONORS IN NBMDR Number of searches Fig. 2. Annual and accumulated number of donor search requests. Average number of monthly searches in 24 was 42 (275 in 22), a reduction related to the recent termination of the EDS system Page 2

4 ACTIVATION OF DONORS IN NBMDR NUMBER OF DONORS ACTIVATED PER PATIENT Number of activated donors Number of patients Number of donors per patient 17 Fig. 3. Annual and accumulated number of activated donors (HLA typing or blood sample shipment). 26 donors were on average activated per month in 24 (29 in 23). Fig. 5. Number of donors activated per patient vs. number of patients for whom one or more donors were activated. PATIENTS WITH ONE OR MORE ACTIVATED DONORS IN NBMDR Number of patients DONATIONS FROM NBMDR Number of donations Ann no first don Ann no sec don Acc no all don 1991 Fig. 4. Annual and accumulated number of patients for whom one or more NBMDR donors were activated. Donors were activated for on average 21 new patients per month in 24 (2 in 23) Fig. 6. Annual and accumulated number of NBMDR donors who have donated bone marrow or PBSC Page 3

5 NUMBER OF MARROW, PBSC AND LYMPHOCYTE DONATIONS Relative number of first donation 1,8 1,6 1,4 1,2 1,,8,6,4,2, Number of LY donations Fig 9. Annual and accumulated number of donations of lymphocytes Fig. 7. of donations of bone marrow and PBSC (first donation only). Since 22, donation of PBSC has been more frequent than donation of bone marrow. DONATIONS PER YEAR PER 1, DONORS Bone Marrow (BM) PBSC BM and PBSC Fig 8. of donations of bone marrow and PBSC (second donation only) 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 (bone marrow and PBSC, first donation) per 1, NBMDR donors per year. Page 4

6 DONATIONS FROM NBMDR TO PATIENTS IN DIFFERENT COUNTRIES Countries USA Germany Norway Sweden France Great Britain Denmark Canada Australia Finland Poland Spain Austria Belgium Italy Switzerland Czech Republic Netherland South Africa Israel Ireland Cuba Slovenia Fig. 11. Number of donations (bone marrow and PBSC, first and second donation) from NBMDR to patients in individual countries. LOCALISATION OF BLOOD BANKS WITH DONORS WHO HAVE DONATED BONE MARROW OR PBSC Oslo Number of donations First donation Second donation Polar circle 5 km Fig. 12. Localisation of the blood banks with donors who have donated bone marrow or PBSC. Table 1. Name of blood bank cities as shown in fig. 12. Blood bank city Number of first donations Oslo 75 Bergen 2 Trondheim 1 Tønsberg 1 Kristiansand 8 Molde 7 Stavanger 6 Fredrikstad 5 Halden 5 Minnesund 5 Tromsø 5 Askim 4 Levanger 4 Lillehammer 4 Skien 4 Gjøvik 3 Hamar 3 Hammerfest 3 Haugesund 3 Moss 3 Nordbyhagen 3 Sandnessjøen 3 Ålesund 3 Arendal 2 Bodø 2 Bærum 2 Drammen 2 Hønefoss 2 Kristiansund 2 Mosjøen 2 Narvik 2 Orkanger 2 Sarpsborg 2 Tynset 2 Førde 1 Harstad 1 Horten 1 Larvik 1 Mandal 1 Mo i Rana 1 Odda 1 Røros 1 Stokmarknes 1 Volda 1 Page 5

7 SEARCH FOR DONORS FOR NORWEGIAN PATIENTS In 24, Institute of Immunology initiated search for 31 Norwegian patients in NBMDR and other registries. By the end of the year, 12 of these patients had been transplanted with an HLA matched unrelated donor, and more are awaiting transplantation in 25. 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 an additional group of patients, but these were not transplanted for various reasons (donors found in the extended family, the patient's treatment protocol was changed, the patient died etc). Table 2 provides the number of donor searches and transplantation for Norwegian patients. By the end of 24, a total of 21 Norwegian patients had been transplanted with an unrelated donor. The donors who have donated stem cells to Norwegian patients by the end of 24 came from 18 different countries (fig. 13). Countries Number of donations Germany Great Britain USA (NMDP) Norway France The Netherlands Australia Sweden Wales Italy Canada Belgium Switzerland Austria Denmark Ireland Singapore Spain Taiwan Fig. 13. Countries which have provided bone marrow or PBSC to Norwegian patients. Page 6

8 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. patients vs. no. of pat. in the need of a tx / / / / / * Result: Total: 343 Total: 21 /7 Rel. no.: 56 *Some of the patients for whom search was initiated in 23 and 24 still remain to be transplanted in 25 (or later). Thus, the rel. number of transplantations during the last few years remains to be increased by transplantations that take place in 25 and 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, and several of them had at least one identified HLA-matched unrelated donor. 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: Inst. of Immunology NBMDR Secretariat Irene Andersen, Head Sidsel M. Strøm, Transpl. and Donor Center Coord Jenny Smaadal Transpl. and Donor Center Coord Torstein Egeland, MD; Med. Dir. International fax: NBMDR Web site: 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 Icelandic collaborators: The Blood Bank Landspitalinn University Hospital Reykjavik, Iceland Head: Sveinn Gudmundsson, MD, PhD Accounts and invoices: Visma Services Norge AS Gjerdrums vei 19 Postboks 433 Nydalen 41 Oslo Tel: , Fax: Page 7