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Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport

4 th Conference of the Hungarian & 2 nd Conference of the Eastern and Central European Pancreatic Study Groups. Pancreatic Cancer Registry. Gábor Lakatos 09 november 2015. 4 th Conference of the Hungarian & 2 nd Conference of the Eastern and Central European

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Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport

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  1. 4thConference of theHungarian & 2ndConference of theEastern and Central European PancreaticStudyGroups PancreaticCancerRegistry Gábor Lakatos 09 november 2015 4thConference of theHungarian & 2ndConference of theEastern and Central European PancreaticStudyGroups HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  2. Pancreaticcancerregistry Introduction Pancreaticcancerremains a major healthproblem Incidence -Worldwide (2008) • newcases: 279 000 • deaths: 266 000 - Hungary (2010): • newcases: 2373 • deaths: 1837 Prognosis- unfavourable 1-year survival: 19% 5-year survival: 0,4-4% HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  3. Pancreaticcancerregistry Introduction Central Europe – limited information • Worseprognosiscomparedto western countries • Increasingincidence and mortality(1.) (Romania, Albania, Croatia, Serbia) Possibleexplanation: Differences: • the use and access of diagnostic toolsandtreatmentmodalities • changes in the incidence of risk factors (for example smoking) (1.) Hariharan D et al HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  4. Pancreaticcancerregistry Introduction RegistryforPancreaticPatients (RPP) • Est.: 2012 • Web-based electronic data collection method • 1600 patients, more than 1300 blood samples in the Biobank. • 34 Hungarian centers • 23 centers from abroad • PancreaticCancerRegistry • Aim: • to prospectively collect and analyze data of pancreatic cancer in the • Hungarian population: • -Epidemiology, Riskfactors, Diagnosis, Staging, Treatment, Survival • tocollectbloodsamplesforfurtherresearchprojects HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  5. Pancreaticcancerregistry Pancreaticcancer. Hungariancohort 2012-2014 • Hungariancohortfor PC • Studyperiod: 2012-2014 • Centers: 14 (Hungary) • Patients: 354 • Data aregoingto be published • ! Whatwehavelearned: • Needtoimprovethequality of datacollection • Needtoextendthe database to other Central and Eastern European countries. HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  6. Pancreaticcancerregistry Renewedregistryforpancreaticcancer • 2015 – theregistryforpancreaticcancer has beencompletelyrenewed • Main changes: • The content of thequestionnairewasfullyupdated • - possibility of more detaileddatacollection • The registry is availableintwolanguages - • -Hungarian • -English • International datacollectionis nowpossible. HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  7. Pancreaticcancerregistry Renewedregistryforpancreaticcancer • Pancreaticcancerregistry – CONTENT • Patientpersonaldetails • Details from the medical history • Symptoms and signs • Patientrelateddata • Tumor-relateddata • Oncologicaltherapy • Supportivetreatment • Concentformis availableonthewebpage • Data recording • Bloodsampling HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  8. Pancreaticcancerregistry Renewedregistryforpancreaticcancer • Pancreaticcancerregistry – CONTENT • Patientpersonaldetails • Details from the medical history • Symptoms and signs • Patientrelateddata • Tumor-relateddata • Oncologicaltherapy • Supportivetreatment • Concentformis availableonthewebpage • Data recording • Bloodsampling HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  9. Pancreaticcancerregistry registryforpancreaticcancer - Content HPSG2015 1. Patientpersonaldetails HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  10. Pancreaticcancerregistry registryforpancreaticcancer - Content • 2. Detailsfromthemedicalhistory • Alcoholconsumption • Smoking • Drugabuse • History of infectiousdisease • Diabetes mellitus • Lipidmetabolismdisorder • Familialpancreaticdisease • Medicationtaken • Diet • Weight/height • BMI HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  11. Pancreaticcancerregistry registryforpancreaticcancer - Content • 3. Symptoms and signs • Abdominalpain • Nausea • Vomiting • Fever • Loss of appetite • Weightloss • Jaundice HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  12. Pancreaticcancerregistry registryforpancreaticcancer - Content • 4. Patientrelateddata • Diagnosis • clinical • histological • Survival status • (Overall survivaltime) • ECOG PS status • Tumor markers: • CA 19-9, CEA • - HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  13. Pancreaticcancerregistry registryforpancreaticcancer - Content • 5. Tumor relateddata • Staging • clinical • pathological • - Surgicaltreatment • resectability • type of surgicalintervention • Endoscopictreatment • Radiologicalintervention HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  14. Pancreaticcancerregistry registryforpancreaticcancer - Content • 6. Oncologicaltherapy • Chemotherapy • Radiotherapy • Moleculartargetedagents • Somatostatinanalogue • Peptid receptor radionuclideTx. • Progression free survival • Best response HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  15. Pancreaticcancerregistry registryforpancreaticcancer - Content • 7. Supportivetreatment • Pain management • Pancreasenzime substitution • Nutritionalsupplements HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  16. Pancreaticcancerregistry Mandatorydata • Mandatorydata: • Personaldata • - Name • Date of birth • Gender • Date of diagnosis • Clinicalstage – resectability • Histologicaldiagnosis is notmandatory HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  17. Pancreaticcancerregistry Data control • Submitteddataneedto be approved. • Twoindependentdatamanager • will monitor thedata • Inpossibletocheckalldata • Possibilitytoaskforsource • documentation HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  18. Pancreaticcancerregistry Conclusions • Increasingincidence and mortality of PC inCentral Europe • Aim:to prospectively collect and analyze data of pancreatic cancer • 2015 – theregistryforpancreaticcancer has beencompletelyrenewed • The registry is availableinHungarian and English • Internationaldatacollection HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

  19. 4thConference of theHungarian & 2ndConference of theEastern and Central European PancreaticStudyGroups PANCREATIC CANCER (PC) registry Thankyoufor yourattention! THE HUNGARIAN PANCREATIC STUDY GROUP IS COMMITTED TO IMPROVING THE LIFES OF PATIENTS SUFFERING FROM PANCREATIC DISEASES! www.pancreas.hu HungarianPancreaticStudy Group – Magyar Hasnyálmirigy Munkacsoport

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