hungarian pancreatic study group – magyar hasnyálmirigy munkacsoport andrea szentesi on behalf of...
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Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport HPSG Registry for Pancreatic Patients 4 th Conference of the Hungarian & 2 nd Conference of the Eastern and Central European Pancreatic Study Groups AP CP PC AIP Autoimmune Pancreatitis Acute Pancreatitis Chronic Pancreatitis Pancreatic Cancer General Registry Prospective studiesTRANSCRIPT
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
Andrea Szentesi
on behalf ofthe Hungarian Pancreatic Study Group
SZEGED, HUNGARY
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
www.pancreas.hu
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Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
AP
CP
PC
AIP Autoimmune Pancreatitis
Acute Pancreatitis
Chronic Pancreatitis
Pancreatic Cancer
General Registry
Prospective studies
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
www.pancreas.hu
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
•Signed Letter of Intent to Join the Registry sent to [email protected]
•Registration on the website
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
•Collecting•Informed Consent Form•EDTA tubes
•Coding•Doctor code + consecutive numbers (e.g.: AB001, AB002,…)•Only the code on the tubes, no personal data!
•Storing•-20⁰C
•Delivery•HPSG covers•Temperature guaranteed•Prior notice required
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
Sources of Data:•Patient – patient questionnaires•Details of medical history•Symptoms
•Electronic Medical Records•Laboratory parameters•Imaging examinations •Interventions
•Therapy information•Conservative terapy
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
1. administrator or doctor2. local doctor
4. principal investigator
approvedrejected with a note
Important!Checking, completing, correctingIncomplete from will be excluded!
3. central admin control
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
•Person who uploads data: access to own data•Local investigator: access to data of own institute•Principal investigator: access to AP or CP data (control)•Administrator: access to all data (control)
To receive a higher level access then the one rendered to the user, a research plan should be proposed to the Hungarian Pancreatic Study Group. The proposal will be evaluated and the access will be decided. Any results based on the data of the HPSG Registry for Pancreatic Patients, can only be published with the consent of the HPSG.
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
All forms and documents are available on our website. Please turn to the team in Szeged should you have any
questions or problems.
Réka BaracsiImre IgnáthPéter Nagy
Andrea SzentesiContact:
[email protected]+36 70 293 75 37
Hungarian Pancreatic Study Group – Magyar Hasnyálmirigy Munkacsoport
HPSG Registry for Pancreatic Patients
4th Conference of the Hungarian & 2nd Conference of the Eastern and Central European Pancreatic Study Groups
THE HUNGARIAN PANCREATIC STUDY GROUPIS COMMITTED TO IMPROVING
THE LIFE OF PATIENTS SUFFERING FROM PANCREATIC DISEASES!
www.pancreas.hu