PAVING THE WAY FOR RESEARCH BIOBANKING IN … CANCER REGISTRY PROGRAM RELATED TISSUE ... DHARMAIS...
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Transcript of PAVING THE WAY FOR RESEARCH BIOBANKING IN … CANCER REGISTRY PROGRAM RELATED TISSUE ... DHARMAIS...
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PAVING THE WAY FOR RESEARCH BIOBANKING IN
INDONESIA
ENDANG SR HARDJOLUKITO DEPT ANATOMICAL PATHOLOGY
FACULTY OF MEDICINE
UNIVERSITY OF INDONESIA
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2 TYPES OF BIOBANK IN INDONESIA
• THERAPEUTIC BIOBANK : 4 EXISTING BIOBANKS – COLLECTING. PROCESSING AND PROVIDE MATERIAL FOR
THERAPEUTIC PURPOSES : • BONE RECYCLING • EYE BALL PROTHESE • AMNION SAC PROCESSING • STEM CELL
• RESEARCH BIOBANK : – COLLECTING, PROCESSING AND PROVIDE MATERIAL FOR
RESEARCH PURPOSES : • EPIDEMIOLOGY STUDIES • ETIO/PATHOGENESIS STUDIES • DIAGNOSTIC STUDIES • PROGNOSTIC AND THERAPEUTIC STUDIES.
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New Therapeutic biobank
• OWNED BY HOSPITAL (CMH)
• UNDER THE MEDICAL TECHNOLOGY DEVELOPMENT DIVISION
– STEM CELL TECHNOLOGY DEVELOPMENT
– BIOBANK FOR TISSUE, UMBILICAL CORD BLOOD
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TOP-DOWN APPROACH
• AIM : RAISE AWARENESS
– AT THE DECISION /POLICY MAKER LEVEL : TO GET NATIONWIDE SUPPORTING GOVT POLICY.
• PRESENTATION AND DISCUSSION WITH KEY PERSONS IN THE Ministry of Research and Technology
– AT NATIONWIDE RESEARCH COMMUNITY : TO ENCOURAGE THEIR INVOLVEMENT AND SUPPORT
• Presentation and discussion at the ICEEBM meeting (Indonesia Center for Epidemiology and Evidence Based Medicine)
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ICEEBM
COUPLING THE DATA AND RELATED TISSUE
DEMOGRAPHIC DATA COLLECTION
NATIONAL CANCER REGISTRY
PROGRAM
RELATED TISSUE
COLLECTION
NATIONAL NETWORK OF
CANCER TISSUE BANK
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Organisational/Coordination Structure
ICE-EBM
NATIONAL COORDINATOR
UNDIP/ RS Kariadi
UGM/
RS Sardjito
UNHAS/
RS Wahidin S
RS KANKER DHARMAIS
UI/ RSCM
UNAIR/
RS Soetomo
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The result
• Excited and Interested
• Great Enthusiasm
BUT ……………………………….
Discouraging by the fund
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Bottom up- approach
• Initiated in the institution – Activate the Dept Biobank group
– Courtesy visit to the Dean • Establishing a faculty “Biobank team”
• Facilitate to look for grants from potential sources : – University, Ministry of Education
– Others
• Facilitate the national symposium next year – Biobank promotion among universities
– Workshop to strengthen our biobank (Univ of Indonesia)
– Foreign speaker will be invited (fr ANRRC? )
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Bottom-up approach (cont)
• Facilitate the agreement with teaching hospital/s – Cipto Mangunkusumo hospital the main teaching hosp.
– Others networking teaching hosp.
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The encouraging point
• University of Indonesia declared as a “Research University” – Core research staff : recruitment w/ special duties
(more in research) and special incentive schemes
• Twin tower : MERC to facilitate research activities – Medical Education and Research Center
• Clusters in research tower are : – Infection-Immunology - Reproduction – Human Cancer - Occupational Health – Human Genetic - Stem Cell & Tissue – Neurosciences Engineering – Clinical Trial - Metabolic and ageing
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The encouraging point (cont)
• Increasing intra mural and extra mural competitive research fund
• More Research oriented and research minded now than before
• Sporadic “biobank” – Dept of Urology – Dept of Internal Mdicine – Dept of Orthopedy – Dept of Microbiology
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How to start w/ a limited fund ?
• BIOBANK SUPPORTED BY THE SPECIAL LAB. TECHNICALLY
LABORATORY BIOBANK
ACCREDITED PROCESSING
PROFIT TAKING
EDU
RES
DG/ RESEARCH
COMMUNITY.
COLLECTING CATALOGING STORING DISTRIBUTING
N O N P R O F I T
P R O F I T
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ANTICIPATING THE COMMON PROBLEM
Henderson et al Genome Medicine 2013 :
FUND …….The sustainability
41 % MAJOR CONCERN
31% MODERATE CONCERN
20% MINOR CONCERN
9% NOT AT ALL
(survey to 456 biobanks)
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How to solve the sustainability ?
• Contradictive / Imbalance situation.
BIOBANK QUALITY
NOVELTY
INTERNAL FUND
EXTERNAL FUND
MANPOWER /SKILL
EQUIPMENT
HIGH COST HIGH COST
???
NON PROFIT
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Non profit based
• Access fee = Cost recovery : ACCEPTABLE cost recovery only : sustain the development ? • Access fee = Cost recovery ++ : CONTROVERSIAL consider as “Profit “? “profit-based” hidden as “Cost recovery ++“ • What is “profit” definition ? To what extent is “profit”acceptable in biobanking ? • Public funded biobank : should be free access for sample Can the public fund fully cover the cost recovery ? Bernice elger et al. Ethical issue in Governing biobank. Global perspective. Ashgate Publ.2008.
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PROPOSED ORGANISATION MODEL TO
MAINTAIN THE SUSTAINABILITY
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How to solve the sustainability ? (CONT)
• COMMERCIAL SIDE OF BIOBANK
PROFIT
HPA HC IHC MP OTHERS
BIOBANK RESEARCH COMMUNITY
EDUCATION RESEARCH DIAGNOSTIC
COMMERCIAL REVENUE
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How to solve the sustainability ? (CONT)
• BIOBANK AS “PROFIT” ORGANISATION.
BIOBANK &
LABS.
RESEARCH COMMUNITY
RECOVERY COST
PROFIT FOR DEVELOPMENT
COST & SURPLUS
PROFIT FOR RESEARCH
GRANT
“PROFIT” based
Similar to Co-op concept
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Henderson et al Genome Medicine 2013
5% of BIOBANK : PROFIT- BASED
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THANK YOU
ARIGATO GOZAIMAS
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How to solve the sustainability ? (CONT)
• BIOBANK SUPPORTED BY THE SPECIAL LAB. FINANCIALLY AND TECHNICALLY
LABORATORY BIOBANK
ACCREDITED PROCESSING
PROFIT TAKING
EDU
RES
DG/ RESEARCH
COMMUNITY.
COLLECTING CATALOGING STORING DISTRIBUTING
N O N P R O F I T
P R O F I T
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• Henderson et al Genome Medicine 2013
While concerns about competition and demand were not substantial, many respondents did express concern about sustainability, typically linked with financial needs. Forty-one percent consider this a major concern, 31% a moderate concern, and 20% a minor concern; only 9% report it is not at all a concern