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ENS@T - Registry News and Updates June 2014

This page shows new studies, updates to data points and functions, and bugs resolved in the past month.

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MAPP-Prono - Malignant pheochromocytoma and paraganglioma: prognostic markers of overall survival of metastatic pheochromocytoma and paraganglioma

A full description of the study can be found here: MAPP-Prono

Data points

MAPP-Prono (the following data points have been added as data input for Pheo patients)

  • New tables
    • Morphological Progression
    • Biological Assessment
    • Surgical Procedures
  • New data points
    • Patient History
      • Date of first pathological diagnosis
      • Date of malignancy diagnosis at imaging
      • Date of malignancy diagnosis at pathology
      • Hormone-related symptoms
      • Tumor-related symptoms
      • Stage of first diagnosis (TNM)
      • Stage of malignancy diagnosis (TNM)
    • Surgery
      • Local institutional review
      • In-growth invasion in surrounding fat/tissue
      • Venous invasion within the tumor
    • Non-Surgical Interventions (type & date)
      • Cryoablation
      • Somatostatine
      • Interferon
      • Radiolabelled octreotide
      • Others
    • Imaging Tests
      • Somatostatine receptor scintigraphy (SRS) (status & date)
      • Best nuclear imaging scan to follow patient
    • Biochemical Assessment
      • Plasma-free methodology
      • Serum chromogranin A methodology
      • Urinary methoxytyramine excretion
      • Urinary creatinine (mmol/24h)
      • Urinary methodology
      • Value indexed to urinary creatinine
    • Morphological Progression (baseline/second dates & rate of normalized progression)
      • RECIST imaging
      • Chromogranin A
      • O-methylated catecholamine metabolites
      • Tumor load at diagnosis of malignancy (liver, lung, bone, lymph node)
    • Biological Assessment (results & status)
      • Hemoglobin [Hgb] (g/dl)
      • Platelets (109/L)
      • Leukocytes [total WBC] (109/L)
      • Neutrophils/Granulocytes [ANC/AGC] (109/L)
      • Creatinine (µmol/L)
      • SGPT [ALT] (IU/L)
      • SGOT [AST] (IU/L)
      • Alkaline phosphatase (IU/L)
      • Total bilirubin (µmol/L)
      • Total protein (g/L)
      • Albuminemia (g/L)
      • Glycemia (mmol/L)
      • LDH (IU/L)
      • Calcium (mmol/L)
    • Surgical Procedures (first/last dates & number of resections)
      • Adrenalectomy
      • Paragangliomectomy
      • Adjacent organ resection
      • Lymph nodes resection
      • Bone surgery
      • Hepatic surgery
      • Lung surgery
      • Other surgery

EURINE-ACT (the following data points have been added to the export function for NAPACA patients)

  • Diagnostic Procedures
    • Symptoms related to hormone secretion
    • Cushing's syndrome
    • Virilisation
    • Feminization
    • Mineralocorticoid excess

Other request from Wuerzburg (the following options have been added to the relevant menu)

  • NAPACA pathology diagnosis
    • Adrenal hyperplasia


  • Search/Export - the functions are now opened for general use. Their operation are detailed in the registry user guide
  • Security policy - the advanced ENSAT security policy has been approved by the steering committee and is now being implemented. Current policy is to restrict detailed information to those patients only belonging to the user. This will be opened out to more sophisticated usage once the security policy is online.


  • Pheo Follow-Up form - under "edit" details, subsidiary options were hidden from view. This has now been fixed.
  • NAPACA to PMT transfer - subsidiary tables were failing to be created in PMT upon transfer from ENSAT. This has now been resolved, though the full transfer function continues to be developed.

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For any technical queries about the registry please contact Anthony Stell.