THE NORWEGIAN BONE MARROW DONOR REGISTRY

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ANNUAL REPORT 2000

THE NORWEGIAN BONE MARROW

DONOR REGISTRY

The Norwegian Bone Marrow Donor Registry

Institute of Immunology

Rikshospitalet University Hospital

N-0027 Oslo

Norway

Irene Andersen and Susanne H. Strandman Nielsen from The Norwegian Bone Marrow Donor Registry deliver an amusing speech when celebrating the registry’s 10 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.

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SUMMARY

The Norwegian Bone Marrow Donor Registry (NBMDR) was established in 1990 after a donation from The Norwegian Cancer Society. In 2000, The Norwegian Cancer Society has continued to support NBMDR, and the society recently renewed its support for another three years. NBMDR celebrated its 10 years anniversary on June 15, 2000.

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 Nor-wegian 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 1995 and as a collection center in 1997. NBMDR was accredited as a donor center in 1997.

HLA typing of donors

By December 31, 2000, 19,343 HLA-A and -B-typed active donors were in the registry. 17,107 (88.4%) were also HLA-DR typed, mostly by genomic intermediate or high resolution typing techniques. 45 donors were withdrawn in 2000 due to high age (14) or other reasons (31).

Search for donors in NBMDR

Donor search requests for 3,640 patients were sent to NBMDR in 2000. 456 donors were evaluated for 324 patients with further HLA-typing or confirmatory testing

marrow or peripheral blood stem cells (PBSC) in 2000. All were first donations. Lymphocytes for post-transplant donor lymphocyte infusion (DLI) were donated once in 2000.

Search for donors for Norwegian

patients

In 2000, 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, trans-plantation with an unrelated HLA matched donor has been performed for 60-70% of the patients for whom an unrelated donor search was initiated.

In 2000, 20 Norwegian patients were transplanted with marrow from an unrela-ted 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 treat-ment of graft failure. By the end of 2000, 143 Norwegian patients have been trans-planted 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 Trond-heim) 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.

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STAFF MEMBERS

The following persons were engaged in NBMDR by the end of 2000 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

Unni Jægård

Donor Center Coordinator, part time

Susanne H. Strandman Nielsen

Donor and Transplant Center Coordinator

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.

RECRUITMENT

Fig. 1. Annual and accumulated number of new

donors. All donors are recruited from blood banks throughout the country.

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 addi-tion, new donors are typed for HLA-DRB1 by oligonucleotide probing defining HLA-DR1, DR2, DR3, DR4, DR7, DR8, DR9, DR10, DR11, DR12, DR13, DR14, and DR103 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.

0 5 000 10 000 15 000 20 000 25 000 N um ber of donors Annual number Accumulated number

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SEARCH FOR DONORS IN

NBMDR

Fig. 2. Annual and accumulated number of donor search request. Average number of monthly searches in 2000 was 303.

ACTIVATION OF DONORS IN

NBMDR

Fig. 3. Annual and accumulated number of

activated donors (HLA typing or blood sample shipment). 38 donors were on average activated per month in 2000.

PATIENTS WITH ONE OR

MORE ACTIVATED DONORS IN

NBMDR

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 2000.

NUMBER OF DONORS

ACTIVATED PER PATIENT

Fig. 5. Number of activated donors per patient vs. number of patients for whom one or more donors were 0 3 000 6 000 9 000 12 000 15 000 18 000 21 000 24 000 N um ber of s earc hes Annual number Accumulated number 0 500 1 000 1 500 2 000 2 500 3 000 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 N um ber of ac tiv at ed donor s Annual number Accumulated number 0 200 400 600 800 1 000 1 200 1 400 1 600 1 800 2 000 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 N um ber of pat ient s Annual number Accumulated number 1 10 100 1 000 1 3 5 7 9 ₁₁ ₁₃ ₁₅ ₁₇

Number of donors per patient

N um ber of pat ient s

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DONATIONS FROM NBMDR

Fig. 6. Annual and accumulated number of NBMDR donors who have donated marrow or PBSC (first donation only).

DONATIONS PER YEAR

PER 1,000 DONORS

Fig 7. Number of stem cell donations /first donation) per 1,000 donors per year in the registry (marrow or PBSC).

DONATIONS FROM NBMDR

TO PATIENTS IN

DIFFERENT COUNTRIES

Fig. 8. Number of donations (marrow and PBSC, first and second donation) from NBMDR to individual countries.

LOCATION OF BLOOD

BANKS WITH DONORS

WHO HAVE DONATED

MARROW OR PBSC

Fig. 9. Localization of the blood banks.

2 8 9 11 16 19 28 24 26 2 10 19 30 46 65 93 117 143 0 20 40 60 80 100 120 140 160 1992 1993 1994 1995 1996 1997 1998 1999 2000 N um ber of f irs t donat ions Annual number Accumulated number 0,0 0,2 0,4 0,6 0,8 1,0 1,2 1,4 1,6 1,8 1992 1993 1994 1995 1996 1997 1998 1999 2000 R elat iv e num ber of f irs t donat ion s 0 10 20 30 40 50 USA Germany Norway France Sweden Denmark Canada Great Britain Spain Australia Austria Belgium Switzerland Cuba Ireland Italy Netherland South Africa C ountries Number of donations First donation Second donation Polar circle Oslo 500 km

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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 2000, 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 2001. During the few last years, 60-70% 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 Norwe-gian patients. By the end of 2000, 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 2000 came from 16 different countries (fig. 10).

Fig. 10. Countries which have provided marrow to Norwegian patients. 0 5 10 15 20 25 30 35 England USA Germany Norw ay France Australia Sw eden Netherlands Canada Italy Wales Belgium Sw itzerland Austria Ireland Singapore C ount ri es Number of donations

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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/retrans-planted patients

Rel. no. (%) of transpl. pat. vs. no. of pat. in

the need of a tx 1989 156 965 7 2 29 1990 399 480 7 4 57 1991 736 463 12 4 33 1992 1 237 923 11 5 45 1993 1 720 363 22 15 68 1994 2 339 766 23 15 /2 65 1995 2 917 935 14 9 /1 64 1996 3 752 646 20 15 /2 75 1997 4 349 144 30 21 70 1998 5 440 000 27 17 63 1999 6 126 479 32 22 69 2000* 6 860 000 25 14 56 Result: 230 143 /5 62

*Many of the patients for whom search was initiated in 2000 still remain to be transplanted in 2001 (or later). **Not all patients for whom a search was initiated were in the end actually in the need of an unrelated donor trans-plantation, 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-0027 Oslo NORWAY Visiting address: Sognsvannsveien 20, Oslo International calls: +47-2307-3500 Inst. of Immunology +47-2307-3770 NBMDR Secretariat

+47-2307-3771 Unni Jægård, Donor Center Coord. +47-2307-3772 Irene Andersen, Head Med. Lab. Techn. +47-2307-3770 Susanne H. Strandman Nielsen,

Transpl. and Donor Center Coord. +47-2307-1344 Ranveig Østrem, Med. Lab. Techn. +47-2307-1379 Torstein Egeland, MD; Med. Dir.

International fax:

+47-2307-3780

MCI Mail:

220-6537 (Donor Center Coord., NBMDR)

202-7934 (Transplant Center Coord., Rikshospitalet)

NBMDR Web site:

http://www.nordonor.org

Email addresses:

The Norwegian Bone Marrow Donor Registry: nordonor@rikshospitalet.no

Irene Andersen: