E health 2020 oog. Oog Melanoom "Data rentmeester"

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This document discusses ocular melanoma research being conducted at Erasmus Medical Center. It provides the following key points: - Approximately 140 patients per year are diagnosed with ocular melanoma between ages 50-70. Treatment involves removing the eye or radiation, but 50% still develop metastases with a poor prognosis. Research aims to find prognostic markers. - Samples including blood, tumor tissue, and healthy tissue are collected from patients. Various tests are conducted including arrays, next-generation sequencing, fluorescence in situ hybridization, and quantitative PCR. - Clinical data and samples from over 900 individuals and 10,000 samples are stored. A research support tool and governance model tracks samples and associated data across analysis and storage. T

Healthcare

Oog Melanoom
“Data rentmeester”
eHealth 2017 27-1-2017
Bert Eussen

Oog Melanoom
• ~140 patienten per jaar lft 50-70j
• Diagnose: routine onderzoek, slecht zicht
• Behandeling:
– Verwijderen oog
– Bestraling
• Ondanks behandeling 50% metastase
zeer slecht prognose
• Research: Zoektocht naar prognostische markers.
http://www.erasmusmc.nl/47457/51016/227068/oogmelanoom

Data en monsters
• ErasmusMC EPD (Elpado)
• Arts onderzoekers
– ( Pathologie verslag, Opzet nieuwe assay/analyse)
• Materiaal: Bloed ( in de tijd), tumor weefsel , gezond weefsel etc
--- DNA /RNA
• Testen: Array, NGS, Chromosoom, FISH, QPCR, SSEQ, IHC
Research support tool ! (mini LIMS Filemaker )
n= 900 personen
n= 10.000 monsters
n= 371/24.000 Arrays
n= 263/6.000 NGS

Inheritance model Study (smallest entity)
Clinical data X Clinical data analysis
Genesis X Front Office X Sample prep X Lab service ( Analysis 1) X Lab Staf X Counseling
Study
PI ----------
Project - Sponsor
Governor
DATA - Finance - Informed Consent
OOG Tumor
E. Kilic
ROMS
Prof Vingerling

Data request
Data request:
 Assays Raw
 Assays Analysis
 Clinical data
 Reports ?

Data
production
Arrays/NGS
Local Network
Author publication folder
Final
Optional:
Analysis software, OS
Reference files
Managed Tape model
Track & Trace MyLTO service (web based)
- TapeMyLTOservice Basic: data to tape + 2 copies+ index
- Tape Storage, data migration, distribution, 5000 arrays or 200 wes/20WGS /LTO6 n=50
TAR- Copy - Checksums
LTO 5-6 6.25 Tb/2,5 Tb raw
LTO 8 12 Tb/ 4 Tb raw ( 2017)
Tape Governance ( PI etc)
Tape ID
Tape type etc.
Index files Tape content
DOI publication_ID
Link production/data tapes
Tape location / migration?
……
pptArray
NGSClin
Index file
Production archive tapes
TAR - Copy- Checksums
Index file
Distribution: Research, Education, Healthcare ……. patient!! Governance KEYS!!
Publication archive tapes
Data production Publications

Acknowledgements:
PI(s) Emine Kilic
Annelies de Klein
Governor(s) Prof Vingerling
Sponsor ROMS
Data rentmeester Bert Eussen
Analisten & onderzoekers
Dashboard design Rianne Kosterman W Kooning HRO
Biomics NGS
Int. medicine Arrays
Pathologie
ICT research Tape/index support
Carelliance Peter Walgemoed
Fortados Tape LTO storage service

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E health 2020 oog. Oog Melanoom "Data rentmeester"

1. Oog Melanoom “Data rentmeester” eHealth 2017 27-1-2017 Bert Eussen

2. Oog Melanoom • ~140 patienten per jaar lft 50-70j • Diagnose: routine onderzoek, slecht zicht • Behandeling: – Verwijderen oog – Bestraling • Ondanks behandeling 50% metastase zeer slecht prognose • Research: Zoektocht naar prognostische markers. http://www.erasmusmc.nl/47457/51016/227068/oogmelanoom

3. Data en monsters • ErasmusMC EPD (Elpado) • Arts onderzoekers – ( Pathologie verslag, Opzet nieuwe assay/analyse) • Materiaal: Bloed ( in de tijd), tumor weefsel , gezond weefsel etc --- DNA /RNA • Testen: Array, NGS, Chromosoom, FISH, QPCR, SSEQ, IHC Research support tool ! (mini LIMS Filemaker ) n= 900 personen n= 10.000 monsters n= 371/24.000 Arrays n= 263/6.000 NGS

5. Inheritance model Study (smallest entity) Clinical data X Clinical data analysis Genesis X Front Office X Sample prep X Lab service ( Analysis 1) X Lab Staf X Counseling Study PI ---------- Project - Sponsor Governor DATA - Finance - Informed Consent OOG Tumor E. Kilic ROMS Prof Vingerling

8. OOG Dashboard OOG research FM database

9. Data request Data request:  Assays Raw  Assays Analysis  Clinical data  Reports ?

10. Data production Arrays/NGS Local Network Author publication folder Final Optional: Analysis software, OS Reference files Managed Tape model Track & Trace MyLTO service (web based) - TapeMyLTOservice Basic: data to tape + 2 copies+ index - Tape Storage, data migration, distribution, 5000 arrays or 200 wes/20WGS /LTO6 n=50 TAR- Copy - Checksums LTO 5-6 6.25 Tb/2,5 Tb raw LTO 8 12 Tb/ 4 Tb raw ( 2017) Tape Governance ( PI etc) Tape ID Tape type etc. Index files Tape content DOI publication_ID Link production/data tapes Tape location / migration? …… pptArray NGSClin Index file Production archive tapes TAR - Copy- Checksums Index file Distribution: Research, Education, Healthcare ……. patient!! Governance KEYS!! Publication archive tapes Data production Publications

11. Acknowledgements: PI(s) Emine Kilic Annelies de Klein Governor(s) Prof Vingerling Sponsor ROMS Data rentmeester Bert Eussen Analisten & onderzoekers Dashboard design Rianne Kosterman W Kooning HRO Biomics NGS Int. medicine Arrays Pathologie ICT research Tape/index support Carelliance Peter Walgemoed Fortados Tape LTO storage service

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