Objec­ti­ves & Goals

The Ger­man Natio­nal Bone Mar­row Donor Regis­try (ZKRD)

“Fas­ter iden­ti­fi­ca­ti­on of the best donor world­wi­de” is the mis­si­on of the ZKRD. Using modern tis­sue matching methods, we search for a sui­ta­ble donor as quick­ly as pos­si­ble for every pati­ent in need of a stem cell trans­plant from an unre­la­ted donor. The ZKRD has one of the lar­gest donor data­ba­ses world­wi­de and is regard­ed as one of the world’s most effi­ci­ent stem cell donor regis­tries. As a cen­ter of excel­lence in this field, the ZKRD and its rough­ly 60-strong team coor­di­na­tes and sup­ports all the rele­vant pro­ces­ses – from donor search to transplantation.

Donor data­ba­se

The cor­ner­stone of all matching acti­vi­ties is the ZKRD data­ba­se, which holds the pseud­ony­mi­zed data of all vol­un­t­a­ry donors in Ger­ma­ny who have been typed. They are the­r­e­fo­re available to dona­te stem cells to pati­ents any­whe­re in the world. The ZKRD data­ba­se alre­a­dy con­ta­ins over 9 mil­li­on ent­ries. The­se data sets must always be kept up to date. Every day, an avera­ge of 1,000 new donor pro­files are added and over 2,000 data sets are updated.

Iden­ti­fi­ca­ti­on of sui­ta­ble donors

On behalf of the search cen­ters, our employees iden­ti­fy poten­ti­al­ly sui­ta­ble stem cell donors for thou­sands of Ger­man pati­ents with blood can­cer. In addi­ti­on, around ten times as many search requests are pro­ces­sed each year for pati­ents abroad. This is achie­ved with the aid of a soft­ware appli­ca­ti­on which screens the data of all the donor pro­files dai­ly to iden­ti­fy a pos­si­ble match for the respec­ti­ve pati­ent, resul­ting in a list of eli­gi­ble donors. The ZKRD then trans­mits the list of sui­ta­ble donor pro­files to the respec­ti­ve search cen­ter or for­eign regis­try that reques­ted the search. If a pro­fi­le seems espe­ci­al­ly pro­mi­sing, the poten­ti­al donor is cont­ac­ted, and con­fir­ma­to­ry typ­ing reques­ted. The donor’s blood will then be tes­ted again in the labo­ra­to­ry ori­gi­nal­ly respon­si­ble for ana­ly­zing the patient’s blood. This pro­ce­du­re means that for most pati­ents in Ger­ma­ny a sui­ta­ble donor can be iden­ti­fied within a few weeks.

Inter­na­tio­nal networking

Each new donor could offer the chan­ce of a new life to a pati­ent for whom a matching donor has not yet been found. The ZKRD has the­r­e­fo­re been coope­ra­ting with other stem cell donor regis­tries world­wi­de ever sin­ce it was foun­ded. This includes the EMDIS net­work (Euro­pean Mar­row Donor Infor­ma­ti­on Sys­tem), whe­re donor pro­files, search requests and orders can be exch­an­ged elec­tro­ni­cal­ly. In the case of search requests, the coope­ra­ting regis­tries have access not only to their own data­ba­ses, but also to the data sets of the other mem­bers. At pre­sent, around 90% of all stem cell donors regis­tered world­wi­de can be rea­ched via EMDIS. The ZKRD has also deve­lo­ped such net­works within the Ger­man stem cell donor sys­tem. Pati­ent and donor data, labo­ra­to­ry requests and test results are thus exch­an­ged bet­ween the ZKRD, search cen­ters and donor centers.

Coor­di­na­ti­on of pati­ent-rela­ted processes

Even after a sui­ta­ble donor has been iden­ti­fied, the ZKRD, as a natio­nal cen­ter of excel­lence, con­ti­nues to sup­port its part­ners by offe­ring com­ple­te work-up manage­ment – from the final decis­i­on on a spe­ci­fic donor to deli­very of the blood stem cells to the trans­plant cen­ter. This pro­cess includes, among other things, coor­di­na­ting appoint­ments bet­ween the trans­plant cen­ter and donor cen­ter, orga­ni­zing ship­ment, and bil­ling the health insu­rance com­pa­nies. Fur­ther­mo­re, the ZKRD pro­vi­des an advi­so­ry ser­vice to its part­ners in addi­ti­on to the docu­men­ta­ti­on and cen­tral bil­ling of all the ser­vices deli­ver­ed in rela­ti­on to the search and dona­ti­on, thus gua­ran­te­e­ing maxi­mum transparency.

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From typ­ing to transplantation

Here you can find infor­ma­ti­on about the pro­cess of a stem cell dona­ti­on from the per­spec­ti­ve of the pati­ent and the donor at a glan­ce.