Annual Report The Norwegian Bone Marrow Donor Registry

Transcription

1 Annual Report The Norwegian Bone Marrow Donor Registry

2 ANNUAL REPORT THE NORWEGIAN BONE MARROW DONOR REGISTRY The Norwegian Bone Marrow Donor Registry (NBMDR) was established in 199 at the Institute of Immunology (previously Institute of Transplantation Immunology), Rikshospitalet Medical Centre, 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 the 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 11 mills. HLA-typed volunteer donors and umbilical cord blood units listed in Bone Marrow Donors Worldwide (BMDW). 244 Norwegian patients have since 199 been transplanted with stem cells from Norwegian (32) and international donor (212). In addition, NBMDR has provided stem cells to 238 patients abroad. NBMDR and international relations NBMDR is a member of the World Marrow Donor Association (WMDA). NBMDR regularly submits donor HLA files to BMDW. National Marrow Donor Program (NMDP), the largest US donor registry, accredited Rikshospitalet Medical Centre as a transplant centre in and as a collection centre in. NBMDR was accredited as a donor centre in. In the fall of, 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 a joint 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 the joint typing effort. By December 31,, 25,169 HLA-A and -B-typed active donors were in NBMDR. 24,76 (95.7%) were also HLA-DR typed, mostly by genomic low or intermediate resolution typing techniques. 176 donors were withdrawn in due to high age (134) or other reasons (42). Search in and donation by NBMDR NBMDR received donor search requests for 4,373 patients in. 41 donors were evaluated for 327 patients with further HLA-typing or confirmatory testing (CT). 27 NBMDR donors donated bone marrow or peripheral blood stem cells (PBSC) in (first donation). One donor donated a second time to the same recipient. Lymphocytes for post-transplant donor lymphocyte infusion (DLI) were donated three times in. By the end of, 27 patients (32 domestic and 238 international patients) have received bone marrow or PBSC from Norwegian donors.14 donors have donated twice to the same recipient and 9 donors have donated twice to different recipients. In, 27 Norwegian donors donated bone marrow (9) or PBSC (18) to patients in USA (9), Norway (7), Germany (2), Sweden (2), Austria (1), Brazil (1), Canada (1), France (1), Poland (1), Russia (1) and Switzerland (1). In addition, one Norwegian donor re-donated PBSC to a patient

3 Search for donors for Norwegian patients In, search requests for 36 new Norwegian patients were made to NBMDR and to registries and cord blood banks around the world. The data file of BMDW is always checked for every search initiated, and it is repeatedly used in an attempt to find a donor for every patient for whom a donor has not been identified. Transplantation with an unrelated HLA matched donor or cord blood has been performed on an average for 59% of the patients for whom an unrelated donor search was initiated. Since, we have found an HLA match donor for 85% of the patients searched for. In, 24 Norwegian patients were transplanted with bone marrow (19) or PBSC (5) from an unrelated HLA matched donor from Norway (7), USA (6), Germany (4), Great Britain (4), Finland (1), France (1) and Wales (1). In addition, one patient was transplanted with a cord blood unit from the US. By the end of, 244 Norwegian patients have since 199 been transplanted with stem cells from an unrelated donor or cord blood. NBMDR and blood banks NBMDR donors are recruited from blood banks throughout the country. Since the fall of, Icelandic donors are also recruited in the Blood Bank of Reykjavik, Iceland. These donors are 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. One newsletter was mailed to all blood banks in. In addition, the large blood banks (Bergen, Oslo, Tromsø, Trondheim and Iceland) 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 : 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 4 ½ positions of Medical Technologists Medical Review Board members: Lorentz Brinch, MD, PhD, Head, Adult Stem Cell Transpl. Program, Section of Blood Diseases, Med. Dept. Geir E. Tjønnfjord, MD, PhD, Section of Blood Diseases, Med. Dept. Anders Glomstein, MD, Head, Children s Stem Cell Transpl. Program, Children s Dept. Gunnar Kvalheim, MD, PhD, Dept. of Cellular Therapy, Radiumhospitalet Med. Centre In addition, medical doctors at the Section of Blood Diseases and Dept. of Cellular Therapy 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 Section of Blood Diseases, and Merete Djupedal coordinated the collection of bone marrow, PBSC and lymphocyte collections at the Department of Cellular Therapy. HLA-typing of donors All new donors are typed for HLA-A, -B, -C and -DRB1 by SSO 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 DPB

4 RECRUITMENT Annual number of recruited donors Accumulated number of all recruited donors Active donors by the end of 2 Fig. 1. Annual and accumulated number of new donors and number of active donors by the end of. All donors are recruited from blood banks throughout the country and (after the fall of ) 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 SEARCH FOR DONORS IN NMBDR 4 35 Annual number Accumulated number Fig. 2. Annual and accumulated number of donor search requests. Average number of monthly searches in was 364 (4 in ). In the fall of, the international EDS searching and reporting system ceased, causing a dramatic reduction in search numbers. In February NBMDR was connected to the international EMDIS system. This connection explains the dramatic increase in search numbers in ACTIVATION OF DONORS IN NBMDR Annual number Accumulated number Fig. 3. Annual and accumulated number of activated donors (HLA typing or blood sample shipment request). 33 donors were on average activated per month in (29 in )

5 PATIENTS WITH ACTIVATED DONORS IN NMBDR Annual number Accumulated number 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 (23 in ) NUMBER OF DONORS ACTIVATED PER PATIENT Fig. 5. Number of donors activated per patient vs. number of patients. Only 1-3 donors were in 88 % of the cases activated per patient. Number of patients Number of donors activated per patient ACCUMULATED NUMBER OF DONATIONS FROM NBMDR 3 25 Accumulated number of all donations Fig. 6a. Accumulated number of NBMDR donors who have donated bone marrow or PBSC

6 ANNUAL NUMBER OF DONATIONS FROM NBMDR Annual number of first donations Annual number of second donations to same patient Fig. 6b. Annual number of NBMDR donors who have donated bone marrow or PBSC. 22 MARROW AND PBSC DONATIONS 3 25 PBSC Bone Marrow (BM) BM and PBSC 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 SECOND DONATIONS OF MARROW AND PBSC PBSC Bone Marrow (BM) BM and PBSC 2 1 Fig. 8. Annual number of second donation of bone marrow and PBSC to same patient

7 LYMPHOCYTE DONATIONS 2 16 Annual number Accumulated number Fig. 9. Annual and accumulated number of donations of lymphocytes. 22 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.,

8 DONATIONS FROM NBMDR TO PATIENTS IN DIFFERENT COUNTRIES USA Fig. 11. Number of donations (bone marrow and PBSC, first and second donation) from NBMDR to patients in individual countries. Germany Norway Sweden France Great Britain Denmark Canada Australia Poland Austria Finland Spain Switzerland The Netherlands Belgium Czech Republic Italy Brazil Cuba Cypros Ireland Russia Slovenia South Africa First donation Second donation to same patient - 8 -

9 BLOOD BANKS WITH DONORS WHO HAVE DONATED BONE MARROW OR PBSC ICELAND NORWAY Reykjavik 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. Oslo Blood bank city No. of donations Blood bank city No. of donations Oslo 87 Sandnessjøen 3 Bergen 23 Ålesund 3 Tønsberg 12 Drammen 2 Kristiansand 11 Førde 2 Trondheim 11 Kristiansund 2 Molde 8 Mosjøen 2 Levanger 7 Narvik 2 Stavanger 7 Orkanger 2 Fredrikstad 6 Sarpsborg 2 Tromsø 6 Tynset 2 Halden 5 Harstad 1 Minnesund 5 Horten 1 Skien 5 Kongsberg 1 Askim 4 Larvik 1 Bodø 4 Mandal 1 Gjøvik 4 Mo i Rana 1 Hamar 4 Namsos 1 Lillehammer 4 Nordfjordeid 1 Arendal 3 Odda 1 Bærum 3 Reykjavik (Iceland) 1 Hammerfest 3 Røros 1 Haugesund 3 Ski 1 Hønefoss 3 Stokmarknes 1 Moss 3 Volda 1 Nordbyhagen 3-9 -

10 DONORS FOR NORWEGIAN PATIENTS Germany USA Great Britain Norway France The Netherlands Sweden Australia Italy Wales Canada Belgium Switzerland Austria Denmark Finland Ireland Singapore Fig. 13. Countries which have provided bone marrow or PBSC to patients in Norway. Spain Taiwan - 1 -

11 SEARCH FOR DONORS FOR NORWEGIAN PATIENTS In, Institute of Immunology initiated search for 36 Norwegian patients in NBMDR and other registries. By the end of the year, 13 of these patients had been transplanted with an HLA matched unrelated donor or cord blood, and more are awaiting transplantation in 27 (table 2). Table 2 provides the number of donor searches and transplantation for Norwegian patients. By the end of, a total number of 244 Norwegian patients had been transplanted with an unrelated donor or cord blood. 6-75% of the patients for whom a donor search was initiated have been transplanted. Since, HLA matched donors have been found for 85-95% of the patients, but not all patients have been transplanted for various reasons (donors found in the extended family, the patient's treatment protocol was changed, cord blood units not indicated for all patients, the patient died etc). The donors who have donated stem cells to Norwegian patients by the end of came from 2 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 and cord blood units listed in Bone Marrow Donors Worldwide (BMDW) at the end of each year is also given as well as the relative number of patients with at least one donor or cord blood unit identified. Search initiated Accumulated no. of donors in BMDW No. of patients for whom a search was initiated** No. of transplanted patients Rel. no. (%) of transplanted patients Rel. no (%) of patients with an identified donor na na na na na na na na na na * * Result: Total: 413 Total: 244 Rel. no.: 59 Rel no.: 88 *Some of the patients for whom search was initiated in and still remain to be transplanted in 27 (or later). Thus, the relative number of transplantations during the last few years remains to be increased by transplantations that take place in 27 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. na: not assessed

12 ADDENDUM Mailing address: The Norwegian Bone Marrow Donor Registry Institute of Immunology Rikshospitalet-Radiumhospitalet HF N-27 Oslo NORWAY Visiting address: Sognsvannsveien 2, Oslo International calls: Institute of Immunology NBMDR Secretariat Irene Andersen, Head Med. Techn Sidsel M. Strøm, Transplant and Donor Center Coord Jenny Smaadal Transplant and Donor Center Coord Torstein Egeland, MD, PhD, Head and Med. Dir. International fax: NBMDR Web site: addresses: The Norwegian Bone Marrow Donor Registry: Irene Andersen: Sidsel M. Strøm: Jenny Smaadal: Torstein Egeland: (for patient issues) Icelandic collaborators: The Blood Bank Landspitalinn University Hospital Reykjavik, Iceland Head of blood bank: Sveinn Gudmundsson, MD, PhD Accounts and invoices: Visma Services Norge AS Gjerdrums vei 19 Postboks 433 Nydalen 41 Oslo Tel: Fax: