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Name of Collaboratory :

 

Com­pe­tence Net­work Pa­ed­ia­tric On­co­lo­gy and Hae­ma­to­lo­gy (KPOH)

 
 

URL :

  http://www.kinderkrebsinfo.de/e2260/e2163/index_eng.html  
 

Collaboratory Status :

 
Operational   Start Date : 1999 End Date : Info Last Updated : Tue, Nov 2 2010 9:01am PDT
 
 

Primary Collaboratory Function :

  Distributed Research Center  
 

Secondary Collaboratory Functions :

  Community Data Systems  
 

Domain(s) :

  BIOLOGICAL/AGRICULTURAL SCIENCES >Biological Sciences >Pathology, Human and Animal  
 

Brief Description of the Collaboratory :

 

The Com­pe­tence Net­work on Pe­d­ia­tric On­co­lo­gy and He­ma­to­lo­gy has be­en foun­ded by the So­cie­ty for Pa­ed­ia­tric On­co­lo­gy and Hae­ma­to­lo­gy (GPOH) in 1999 upon a grant of the Ger­man Mi­nis­te­ry for Edu­ca­ti­on and Sci­ence (BMBF). The net­work was es­ta­blis­hed in or­der to im­pro­ve the co-​ope­ra­ti­on bet­ween va­rious cli­ni­cal and re­se­arch in­sti­tu­ti­ons, ai­ming at im­pro­ving health ca­re pro­vi­si­on for child­ren and young adults with can­cer.

The net­work's spea­ker, Prof. Dr. med. Dr. h.c. Gün­ter Hen­ze, de­cla­red that the com­pe­tence net­work shall pro­du­ce "mo­re know­ledge, bet­ter un­der­stan­ding, and mo­re com­pre­hen­si­vely su­cess­full tre­at­ment" with re­gard to ma­li­gnant di­sea­ses in child­ren and young adults.

The Com­pe­tence Net­work on Pe­d­ia­tric On­co­lo­gy and He­ma­to­lo­gy ad­dres­ses spe­ci­fic ques­ti­ons and pro­blems in ten mul­ti­cen­tric pro­jects. A coor­di­na­ti­on and ma­nage­ment group is working as a ser­vice unit for all part­ners in­vol­ved in re­se­arch and tre­at­ment. The new pro­fes­si­on of a re­se­arch and stu­dy as­sis­tant has be­en crea­ted and an edu­ca­tio­nal pro­gram star­ted in or­der to sup­port the lar­ge tre­at­ment cen­ters. Com­pu­ter ba­sed ap­p­li­ca­ti­on sys­tems for do­cu­men­ta­ti­on, te­le­me­di­ci­ne and the­ra­py plan­ning are being de­ve­lo­ped and tes­ted. So­lu­ti­ons for pro­blems of da­ta pro­tec­tion and se­cu­ri­ty ha­ve be­en worked out. Th­ree tu­mor banks with a cen­tral tu­mor da­ta ba­se we­re es­ta­blis­hed. A na­tio­nal re­gis­try of pro­jects in im­mu­no-​ and ge­ne the­ra­py has be­en es­ta­blis­hed and tre­at­ment mo­da­li­ties we­re do­cu­men­ted. A da­ta ba­se has be­en com­pi­led for a na­ti­onwi­de ana­ly­sis on the fre­quen­cy and pre­dis­po­sing fac­tors for the oc­cur­rence of 2nd ma­li­gnant ne­o­plasms. Stan­dar­di­zed fol­low-​up re­com­men­da­ti­ons to mea­su­re so­ma­tic and neu­ro­psy­cho­lo­gi­cal long-​term ef­fects to­ge­ther with qua­li­ty of life ha­ve be­en for­mu­la­ted and we­re in­te­gra­ted as amend­ments in­to tre­at­ment pro­to­cols for child­ren with leu­ke­mi­as and em­bryo­nal tu­mors. Stu­dies on mi­ni­mal re­si­du­al di­sea­se ha­ve be­en in­cor­po­ra­ted in­to cli­ni­cal tri­als.

Network speaker: Prof. Dr. Günter Henze, Berlin

Member of the Technologie- und Methodenplattform für die vernetzte medizinische Forschung (TMF) collaboratory.

 
 

Access to Instruments :

  Com­pu­ter ba­sed ap­p­li­ca­ti­on sys­tems for do­cu­men­ta­ti­on, te­le­me­di­ci­ne and the­ra­py plan­ning are being de­ve­lo­ped and tes­ted.  
 

Access to Information Resources :

   
 

Access to People as Resources :

  A coor­di­na­ti­on and ma­nage­ment group is working as a ser­vice unit for all part­ners in­vol­ved in re­se­arch and tre­at­ment. The coor­di­na­ti­on group of­fers its ser­vice to all pro­jects of the Com­pe­tence Net­work.

Among the ser­vices for rea­liza­ti­on of the dif­fe­rent pro­jects hig­her-​le­vel goals are:

Editing and pu­bli­ca­ti­on of the 'The Noti­ces', a news­let­ter for the So­cie­ty for Pe­d­ia­tric On­co­lo­gy and He­ma­to­lo­gy and the Com­pe­tence Net­work on Pe­d­ia­tric On­co­lo­gy and He­ma­to­lo­gy, sin­ce 03/29/2000.

Sup­port of tri­al rea­liza­ti­on: As­sis­tan­ce with the iden­ti­fi­ca­ti­on and so­lu­ti­on of ge­ne­ral pro­blems con­cerning col­lec­tion, pro­ces­si­on and eva­lua­ti­on of tri­al da­ta. Help with the im­pro­ve­ment of an ex­chan­ge of in­for­ma­ti­on bet­ween tri­al coor­di­na­ti­on cen­ters and hos­pi­tals. The pro­to­ty­pe of a ma­te­ri­al ma­nage­ment da­ta­ba­se for la­bo­ra­to­ries and the up­date of bi­blio­gra­phies on a re­gu­lar ba­sis is of­fe­red as a ser­vice to tri­al coor­di­na­ti­on cen­ters. The Stu­dy Sup­port Group is one of the Coor­di­na­ti­on and Ma­nage­ment Groups own pro­jects.

Es­ta­blish­ment and re­gu­lar up­date of a li­te­ra­ture da­ta­ba­se

Cer­ti­fi­ca­ti­on and im­ple­men­ta­ti­on of IT se­cu­ri­ty

Su­per­vi­si­on of the As­sis­tants for Cli­ni­cal Re­se­arch and Qua­li­ty Con­trol (ACRQC). ACRQC are ac­tive in 27 pe­d­ia­tric on­co­lo­gic cen­ters na­ti­onwi­de and play a cen­tral ro­le in the Com­pe­tence Net­work work. They are su­per­vi­sed, trai­ned, in­for­med and eva­lua­ted by the Coor­di­na­ti­on and Ma­nage­ment Group.
Know­ledge Ser­ver
Stu­dy Sup­port
Ver­ti­cal Cross Lin­king
As­sis­tants in Cli­ni­cal Re­se­arch and Qua­li­ty Con­trol (ACRQC)
Eva­lua­ti­on

The Stu­dy Sup­port Group's tasks in­clu­de:
De­ve­lop­ment of a qua­li­ty ma­nage­ment sys­tem

As­sis­tan­ce with stu­dy pro­to­cols

Pro­mo­ti­on of com­mu­ni­ca­ti­on

Pro­vi­si­on of a ma­te­ri­al da­ta­ba­se

 
 

Funding Agency or Sponsor :

 
Federal Ministry of Education and Research (BMBF)
 
 
 

Notes on Funding Agencies/Sponsors:

 
 
 
Organizations with Funded Participants:
 
Organization name:
Approx # of participants:
Description of organization's role(s):
Charité - Universitätsmedizin Berlin
3
Head, Coor­di­na­ti­on and Ma­nage­ment Group (Gün­ter Hen­ze); Pro­ject Ma­na­ger (Uda Oua­ki­di); Project Assistant (Jyt­te Kra­ke)
Erasmus Medical Center
1
Hannover Medical School
5
Study Support (Ju­lia Han­ne­mann, Ire­ne Krä­mer, Chris­tia­ne Ten­ben­sel, Frau Krä­mer)
Johannes-Gutenberg-Universitat Mainz
1
Headquarters for the project: Da­ta Pro­tec­tion, IT Se­cu­ri­ty, and Know­ledge Ser­ver (Pro­ject B/2)
   Universitätsmedizin Mainz
1
Se­cond Ma­li­gnant Ne­o­plasms Af­ter Child­hood Can­cer (Pro­ject K) (Pe­ter Kaatsch)
Katholieke Universiteit Leuven
1
Saarland University
1
Te­le­me­di­ci­ne in Pe­d­ia­tric On­co­lo­gy (Pro­ject C) (Nor­bert Graf)
St. Anna Kinderspital
1
Technische Universität Braunschweig
1
Ulm University
1
Mo­le­cu­lar Pa­ra­me­ters of Drug Re­sis­tan­ce (Pro­ject D) (Klaus-​Mi­cha­el De­ba­tin)
Uni­ver­si­täts­kli­ni­kum Gie­ssen und Mar­burg
1
Pro­gnostic Re­le­van­ce of Mi­ni­mal Re­si­du­al Di­sea­ses (Pro­ject F) (Jo­chen Har­bott)
Universität Bielefeld
1
University of Cologne
1
Cli­ni­cal Re­le­van­ce of Mo­le­cu­lar Chan­ges in Em­bryo­nal Tu­mors (Pro­ject G) (Frank Bert­hold)
University of Muenster
1
La­te Ef­fects, Qua­li­ty of Life and a Ver­ti­cal Net­work (Pro­ject I) (Ga­brie­le Ca­la­mi­nus)
 
TOTAL PARTICIPANTS:
20
 

Notes on Participants/Organizations:
The Coor­di­na­ti­on and Ma­nage­ment Group Team sup­ports the Net­work's dif­fe­rent pro­jects in ma­ny ways. It al­so fol­lows its own pro­jects wi­t­hin the Com­pe­tence Net­work.

Ma­jor tasks are coor­di­na­ti­on and or­ga­niza­ti­on of the work wi­t­hin sin­gle pro­jects as well as Net­work wi­de coope­ra­ti­on. The Coor­di­na­ti­on and Ma­nage­ment Group helps the GPOH achie­ve its goal of es­ta­blis­hing and im­pro­ving struc­tures of coope­ra­ti­on.

The Coor­di­na­ti­on and Ma­nage­ment Group is con­cer­ned with the coor­di­na­ti­on of in­for­ma­ti­on flow, the coope­ra­ti­on bet­ween hos­pi­tals and re­se­arch in­sti­tu­ti­ons, the work of the ACRQC (As­sis­tants in Cli­ni­cal Re­se­arch and Qua­li­ty Con­trol), an in­ter­nal and ex­ter­nal eva­lua­ti­on, and pu­blic re­la­ti­ons. The coor­di­na­ti­on group of­fers its ser­vice to all pro­jects of the Com­pe­tence Net­work. Ano­ther ma­jor part of its work is the ma­nage­ment of pu­blic re­la­ti­ons by which pa­ti­ents and ge­ne­ral prac­ti­tio­ners are to be re­ached.

   
     
 
 

Communications Technology Used :

   
 

Technical Capabilities :

   
  Key Articles :    
 

Project-reported performance data :

   
 
         
    
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