Annual Report 25 The Norwegian Bone Marrow Donor Registry
ANNUAL REPORT THE NORWEGIAN BONE MARROW DONOR REGISTRY 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. We are very grateful for their continuous support. 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 patients suffer from malignant blood disorders as well as other severe blood diseases, metabolic diseases, and immunodeficiencies in children. NBMDR is part of an extensive international collaboration, representing more than 1 mill. HLA-typed volunteer donors and umbilical cord blood units listed in Bone Marrow Donors Worldwide (BMDW). 218 Norwegian patients have since 199 been transplanted with stem cells from Norwegian (25) or international donor (193). In addition, NBMDR has provided stem cells to 218 patients abroad. NBMDR and international relations NBMDR is a member of the World Marrow Donor Association (WMDA). NBMDR regularly submits its donor file to 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 where Icelandic donors are recruited in the blood bank and are HLA typed in Reykjavik and Oslo as part of an HLA typing effort. 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, 25, 23,424 HLA-A and -B-typed donors were in NBMDR. 22,311 were also HLA-DR typed, mostly by genomic low or intermediate resolution typing techniques. 85 donors were withdrawn in 25 due to high age (51) or other reasons (34). Search in and donation by NBMDR Donor search requests for 483 patients were sent to NBMDR in 25. 383 donors were evaluated for 272 patients with further HLA-typing or confirmatory testing (CT). 16 NBMDR donors donated bone marrow or peripheral blood stem cells (PBSC) in 25 (first donation). No donors donated a second time to the same recipient. Lymphocytes for post-transplant donor lymphocyte infusion (DLI) were donated twice in 25. By the end of 25, 243 donors had donated bone marrow or PBSC to domestic (25) and international (218) patients. In addition, 13 donors had donated twice to the same recipient. Search for donors for Norwegian patients In 25, search requests for 34 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 always checked for every search initiated, and it is repeatedly used for every patient for whom a donor has not been identified. Transplantation with an unrelated HLA matched donor has been performed on an average for 61% of the patients for whom an unrelated donor search was initiated. - 2 -
In 25, 18 Norwegian patients were transplanted with bone marrow (1), PBSC (5) or umbilical cord blood (3) from an unrelated HLA matched donor from USA (8), Germany (5), Italy (2), Sweden (1), Canada (1) and Great Britain (1). By the end of 25, 218 Norwegian patients have since 199 been transplanted with stem cells from an unrelated donor. NBMDR and blood banks NBMDR donors are recruited from blood banks throughout the country. Since 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 25. Two newsletters were 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. NBMDR is very grateful to the blood banks their effort is crucial to NBMDR. Staff and collaborators The following persons were engaged in NBMDR by the end of 25: Torstein Egeland, MD, PhD, Head of NMBDR and Medical Director Irene Andersen, Head Medical Technologist Sidsel M. Strøm, Donor and Transplant Center Coordinator Jenny Smaadal, Donor and Transplant Center Coordinator and 5 ½ positions of Medical Technologists 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- Radiumhospitalet Medical Center - constitute NBMDR s Medical Review Board. In addition, medical doctors at the Section of Blood Diseases and Volvat Medical Centre (NBMDR s bone marrow collection centre in 25), conducted donor information sessions and health examinations for Norwegian donors who were selected for bone marrow or PBSC donation. Anne-Grethe Fjellman coordinated the collaboration with the transplant physicians at Rikshospitalet-Radiumhospitalet Medical Center, Anne Marie Skaug and Heidi Muri coordinated bone marrow collections at Volvat Medical Centre, and Ruby Skogheim coordinated the collection of PBSC and lymphocyte collections at the Section of Cell Therapy, Institute of Immunology. HLA-typing of donors All new donors are typed for HLA-A, -B, -C and -DRB1 by SSOP technique. SSP typing is performed if the initial typing is inconclusive. Upon request, NBMDR performs low and high resolution genomic typing for A, B, C, DRB1, DRB3, DRB4, DRB5, DQB1, and DPB1. - 3 -
RECRUITMENT 25 2 Annual number of recruited donors Accumulated number of all recruited donors Active donors by the end of 25 Fig. 1. Annual and accumulated number of new donors, and number of active donors by the end of 25. All donors are recruited from blood banks throughout the country and (after the fall of 24) also from Iceland. The yellow bars are shorter than the blue bars. This is because a certain fraction of the donors have been removed as time has passed, due to high age or other reasons. 15 1 5 1989 21 23 25 SEARCH FOR DONORS IN NMBDR 35 3 Annual number Accumulated number 25 2 Fig. 2. Annual and accumulated number of donor search requests. Average number of monthly searches in 25 was 4 (42 in 24). In the fall of 23, the international EDS searching and reporting system ceased, causing a dramatic reduction in search numbers. 15 1 5 1989 21 23 25 ACTIVATION OF DONORS IN NBMDR 4 5 4 3 5 Annual number Accumulated number 3 2 5 2 1 5 Fig. 3. Annual and accumulated number of activated donors (HLA typing or blood sample shipment request). 29 donors were on average activated per month in 25 (26 in 24). 1 5 21 23 25-4 -
NUMBER OF DONORS ACTIVATED PER PATIENT 1 2229 Fig. 4. Number of donors activated per patient vs. number of patients for whom one or more donors were activated. As can be seen, only 1-3 donors were in 97 % of the cases activated per patient. Number of patients 1 1 1 1 399 88 35 24 6 6 3 3 2 2 1 1 1 1 2 3 4 5 6 7 8 9 1 11 12 13 14 15 16 17 Number of donors activated per patient PATIENTS WITH ACTIVATED DONORS IN NMBDR 3 5 3 Annual number Accumulated number 2 5 2 1 5 Fig. 5. 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 25 (21 in 24). 1 5 21 23 25 DONATIONS FROM NBMDR 3 25 2 Annual number of first donations Annual number of second donations to same patient Accumulated number of all donations 15 1 5 Fig. 6. Annual and accumulated number of NBMDR donors who have donated bone marrow or PBSC. 21 23 25-5 -
MARROW AND PBSC DONATIONS 3 25 2 PBSC Bone Marrow (BM) BM and PBSC 15 Fig. 7. Annual number of donations of bone marrow and PBSC (first donation only). Since 22, donation of PBSC has been more frequent than donation of bone marrow. 1 5 21 23 25 SECOND DONATIONS OF MARROW AND PBSC 5 4 3 PBSC Bone Marrow (BM) BM and PBSC Fig. 8. Annual number of second donation to same patient of bone marrow and PBSC (second donation only). 2 1 21 23 25 LYMPHOCYTE DONATIONS 15 12 Annual number Accumulated number 9 6 3 Fig. 9. Annual and accumulated number of donations of lymphocytes. 21 23 25 DONATIONS PER YEAR PER 1, DONORS 2 1,5 1 Fig. 1. Number of stem cell donations (bone marrow and PBSC, first donation) per 1, NBMDR donors per year.,5 21 23 25-6 -
DONATIONS FROM NBMDR TO PATIENTS IN DIFFERENT COUNTRIES 15 3 45 6 75 9 Fig. 11. Number of donations (bone marrow and PBSC, first and second donation) from NBMDR to patients in individual countries. USA Germany Norway Sweden France Great Britain Denmark Canada Australia Finland Poland Spain Austria Belgium Czech Republic Italy Switzerland The Netherlands Cuba Cypros Ireland Netherland Slovenia South Africa First donation Second donation to same patient - 7 -
BLOOD BANKS WITH DONORS WHO HAVE DONATED BONE MARROW OR PBSC Polar circle Fig. 12. Localisation of the blood banks with donors who have donated bone marrow or PBSC. Oslo 5 km Table 1. Name of blood bank cities as shown in fig. 12. Blood bank city No. of donations Oslo 79 Bergen 21 Trondheim 11 Tønsberg 1 Kristiansand 9 Molde 7 Fredrikstad 6 Stavanger 6 Tromsø 6 Halden 5 Minnesund 5 Askim 4 Levanger 4 Lillehammer 4 Skien 4 Arendal 3 Bodø 3 Bærum 3 Gjøvik 3 Hamar 3 Hammerfest 3 Haugesund 3 Hønefoss 3 Moss 3 Blood bank city No. of donations Nordbyhagen 3 Sandnessjøen 3 Ålesund 3 Drammen 2 Førde 2 Kristiansund 2 Mosjøen 2 Narvik 2 Orkanger 2 Sarpsborg 2 Tynset 2 Harstad 1 Horten 1 Kongsberg 1 Larvik 1 Mandal 1 Mo i Rana 1 Namsos 1 Nordfjordeid 1 Odda 1 Røros 1 Ski 1 Storkmarknes 1 Volda 1-8 -
DONORS FOR NORWEGIAN PATIENTS 5 1 15 2 25 3 35 4 45 5 55 Germany Great Britain USA (NMDP) Norway France The Netherlands Sweden Australia Italy Wales Canada Belgium Switzerland Aus tria Denmark Ireland Singapore Fig. 13. Countries which have provided bone marrow or PBSC to patients in Norway. Spain Taiwan - 9 -
SEARCH FOR DONORS FOR NORWEGIAN PATIENTS In 25, Institute of Immunology initiated search for 34 Norwegian patients in NBMDR and other registries. By the end of the year, 9 of these patients had been transplanted with an HLA matched unrelated donor, and more are awaiting transplantation in 26. 6-75 % of the patients for whom a donor search was initiated have actually been transplanted (table 2). In addition, HLA matched donors have been found for an additional number of patients, but these patients 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 25, a total number of 218 Norwegian patients had been transplanted with an unrelated donor. The donors who have donated stem cells to Norwegian patients by the end of 25 came from 19 different countries (fig. 13). 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 57 736 463 12 4 33 1992 1 237 923 11 5 45 1 72 363 22 15 68 1994 2 339 766 23 15 /2 65 2 917 935 14 9 /1 64 1996 3 752 646 2 15 /2 75 4 349 144 3 22 73 1998 5 44 27 17 63 6 126 479 32 22 /1 69 2 6 86 25 16 64 21 7 522 21 27 19 7 22 8 191 38 29 16 55 23 8 878 798 26 13 /1 5 24* 9 58 698 31 16 /2 52 25* 1 15 34 19 56 Result: Total: 377 Total: 229 /9 Rel. no.: 61 *Some of the patients for whom search was initiated in 24 and 25 still remain to be transplanted in 26 (or later). Thus, the rel. number of transplantations during the last few years remains to be increased by transplantations that take place in 26 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. - 1 -
NBMDR CELEBRATED 1 MILLION STEM CELL DONORS WORLDWIDE! The international stem cell donor database, Bone Marrow Donors Worldwide (BMDW), had in November 25 registered the 1 millionth volunteer stem cell donor. This has been recognized by stem cell registries worldwide, and the United Donors Worldwide Day was set to November 16. Each registry decided if and how they wanted to celebrate the day, and many registries celebrated their 1 millionth stem cell donor. The Norwegian Bone Marrow Donor Registry celebrated BMDW s 1 millionth donor by having an exhibition in the main hallway ( Glassgaten ) at Rikshospitalet University Hospital. The exhibition displayed recruitment posters from different registries. Wednesday November 16, NBMDR had a gathering in Store Auditorium at Rikshospitalet University Hospital. The guest of honour was of course our donor no. 1 million, Berit Sannes, a 31 years old woman living in the city of Tromsø in northern Norway. Other distinguished guests included Anne Lise Ryel, Secretary General of the Norwegian Cancer Society, Bengt Eidem, the transplanted leukaemia patient who has brought stem cell transplantation and donor search into focus in 25 through public television and a book about his disease, Åge Danielsen, COO at Rikshospitalet-Radiumhospitalet Medical Center, and Rolf Svanevik, Product Manager in Novartis-Oncology. After a lecture on stem cell transplantation given by Dr. Tobias Gedde-Dahl d.y., the personnel at the Institute of Immunology, where NBMDR is located, and our distinguished guests were invited to a celebration party at the institute. The Norwegian donor no. 1 million, Berit Sannes. (In the background, Torstein Egeland, Head of The Norwegian Bone Marrow Donor Registry) Berit Sannes (left), the Norwegian donor no. 1 million, and Bengt Eidem, Norwegian transplanted leukaemia patient. Anne Lise Ryel (left), Secretary General of the Norwegian Cancer Society, and Åge Danielsen, COO at Rikshospitalet- Radiumhospitalet Medical Center. Celebration party at the Institute of Immunology. - 11 -
Irene Andersen, Head MT of The Norwegian Bone Marrow Donor Registry, at the exhibition. From the exhibition. From the exhibition. The Norwegian donor no. 1 million, Berit Sannes at the exhibition. From the exhibition. From the exhibition. - 12 -
ADDENDUM Mailing address: The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet-Radiumhospitalet Medical Center N-27 Oslo NORWAY Visiting address: Sognsvannsveien 2, Oslo International calls: +47-237-35 Institute of Immunology +47-237-377 NBMDR Secretariat +47-237-3772 Irene Andersen, Head Med. 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, PhD, 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@medisin.uio.no torstein.egeland@rikshospitalet.no (for patient issues) 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: +47-2258-45, Fax: 47-2258-451-13 -