Provision of rare blood for patients in the DGTI countries

Provision of rare blood for patients in the DGTI countries Inge von Zabern Lu(b-) Co(a-) LAN- ingeborg.von-zabern@uni-ulm.de Graz, September 13, 2012 AG Seltene Blutgruppen der Sektion V Kp(b-) Vel- www.seltene blutgruppen.de Institut für Transfusionsmedizin, Universitätsklinikum Ulm Institut für Klinische Transfusionsmedizin und Immungenetik Ulm

DGTI countries Switzerland, Austria, Germany Blood transfusion services run by universities and communities private organizations the red cross (some institutes affiliated to universities) The single very rare donor who is needed might be in anyone of the many transfusion services, therefore the engagement of every transfusion service for rare blood counts! Seltsam A, Wagner FF, Salama A, Flegel WA. Transfusion 2003;43:1563-1566

DGTI countries Switzerland, Austria, Germany Local exchange of serum and cells Centres with RBC cryopreservation and databases of typed donors Centres without cryopreservation but with larger databases of typed donors Seltene Blutspender Register

Concept for the provision of rare blood Cryopreserved RBC - expensive - use for very rare blood groups acute provision high demand - provide stocks with antigen diversity Donor recruitment - programs for genotyping - serological typing Fresh RBC - cost efficient - provision possible for Lu(b-), Yt(a-), Co(a-) if sufficient donors are typed - use for planned and low demand Secure and cost-efficient provision of rare blood

Centers with cryopreservation of RBC Hagen Ulm München Wien Seltsam A, Wagner FF, Salama A, Flegel WA. Transfusion 2003;43:1563-1566

Cryopreserved RBC units in Germany (raredonor.bsd-be.ch, April 2012) and in Austria (September 2012)

Typing programs in the DGTI Seltene Blutspender Register Country Austria Wien Switzerland Bern, Zürich Germany Springe Germany Hagen Germany Ulm, Baden- Baden Germany München Typing strategy Multiplex PCR: 35 antigens Serologic and molecular typing Multiplex PCR: Fy a/b, Jk a/b, MNSs, Co a/b, Lua/b, Yt a/b, Kp a/b Serologic and molecular typing Serologic and molecular typing Serologic typing Output of rare blood groups Number > 20 000 donors 2011/2012 40000 donors tested for Vel and Kp a /Kp b Genotyping: Bern 7000, Zürich 7700 Switzerland 60 000-70 000 donors planned 16.000 donors/year Vel typing Genotyping 3000 donors 40000 donors planned Serologic ca. 2500 donors/year 5000 donors (Yt, Lu, Lan) 16000 donors Kp b, K null, Vel

Donors with rare blood groups in the DGTI countries (Germany June 2012, Austria, Switzerland September 2012)

Provision of rare blood Shortages and supplies Shortages U-, S-s- Kx- K null Fy(a-b-), Jk(a-b-), Co(a-b-) Ge2- Di(b-) Js(a-) Gy(a-), Hy-/Joa- Supplies Lub-, Yta-, Co(a-) Vel- LAN- Jra- Lu(a-b-), AnWj- Very Limited: Kpb-, Bombay, -D-, Rh null (BG A), Tja-

RBC units provided for transfusion in Germany approximately 83/year (minimum) (cumulative data 6.5 years) RBC negative for Jr a Approximate phenotype frequency very rare Germany - observation period 07/05 12/11 Fresh* Cryopreserved Total Lu b 1:500-1000 150 36 186 Yt a 1:200-500 145 21 166 Vel 1:2500-5000 53 42 95 Kp b 1:2500-10000 18 14 32 Co a 1:200-1000 8 16 24 Bombay very rare 3 6 9 2 9 11 K (K null ) very rare 4 3 7 In Switzerland and Austria together approximately 40-50/year numbers of KK, CCddee, ccddee not reported Pk very rare 2 2 4 U- very rare 0 4 4 LAN 1:5000-20000 1 2 3 Rh (Rh null ) very rare 0 2 2 CCDDEE very rare 1 0 1 Fy(a-b-) very rare 1 0 1 Total 388 (72%) 157 (28%) 545 07/05-12/07 Dessau, Hagen, München, Ulm ; 01/08-12/11 Hagen, München, Ulm *underestimated, not all centres provided data.

Provision of rare blood Supplies Many more enquiries than actual deliveries For securing provision in case of emergency operations pregnancies Increasingly patients of ethnic minorities Young immigrants, pregnancies

DGTI WP ISBT shipment response form Use of the form in Germany for quality control of cryopreserved units regarding shipment mainly national, few international use patient outcome rise in Hb side effects documentation of cryopreserved units delivered reflects need

Shipment response form (modified) use in Germany

DGTI WP Shipment response form Evaluation of questionnaires (n=58) German Red Cross Transfusion Services Institute Hagen : R. Deitenbeck, B. Just Institute Ulm: I. v. Zabern Cryopreserved and reconstituted RBC units only 3 international transports to Austria (close to German border) Case reports 69% surgery 10% gastrointestinal bleeding 9% internal medicine, oncology, hematology 12% no diagnosis available

DGTI WP Shipment response form Evaluation of questionnaires (n=58) Control of use 27/129 RBC units provided were not transfused (21%; 16% in Hagen, 23% in Ulm) institutions located at larger geographical distance from cryopreserving centre 3 cases where pregnant women moved prior to delivery to the University Hospital with RBC cryopreservation

DGTI WP Shipment response form Evaluation of questionnaires (n=58) incomplete address of receiving institution 1x recheck address, ask for round-the-clock service Control of transfusion success increase in hemoglobin average of 0.8 mg/dl per RBC unit in 22 cases (0.2 1.5 mg/dl), adequate in 15 cases» often bleeding involved no transfusion reaction

Website seltene-blutgruppen.de

DGTI countries Switzerland, Austria, Germany Blood transfusion services run by universities and communities private organizations the red cross (institutes in part attached to universities) The engagement of every transfusion service for rare blood counts! Seltsam A, Wagner FF, Salama A, Flegel WA. Transfusion 2003;43:1563-1566

DGTI countries Switzerland, Austria, Germany

Universität Ulm Institut für Klinische Transfusionsmedizin und Immungenetik Ulm (IKT Ulm)