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Establishing a Canadian Child Health Research Network

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Title: Establishing a Canadian Child Health Research Network


1
Establishing a Canadian Child Health Research
Network November 2004
2
Why child health research?
  • Pediatric diseases have a greater component of
    genetic determinants than adult diseases
  • Antecedents of adult diseases can be found in
    pediatric populations
  • Children are a manageable population sector
  • Child health leads to a stronger economic base
    healthy children today means healthy adults
    (working population) tomorrow
  • Children have been identified as a
    unique/vulnerable research population

3
The external context favours the establishment of
a child health research network (I)
  • Changing public expectations (relevance,
    knowledge transfer, technology transfer and
    ethics, as criteria for excellence)
  • Big - big science (theme based funding,
    programs rather than projects, expected return on
    investment)
  • Emphasis on quality in research oversight
  • Competition for staff/trainees

4
The external context favours the establishment of
a child health research network (II)
  • Investment in research is continuing
  • The requirement for institutional participation
    in many matching programmes would be
    facilitated by a network
  • Opportunity to blend both federal and provincial
    funding
  • Possibility of attracting private funds through
    national fund-raising activities

5
Opportunity for a Child Health Research Network
  • Research on children has unique elements, in
    particular their developmental processes
  • Knowledge transfer may be especially feasible on
    issues of child health
  • Increasing emphasis on translation research the
    idea that translation research is feasible has
    become established in past 10 years
  • Increasing emphasis on multi-centre research
  • Opportunity to build competence and capacity and
    minimise / eliminate weaknesses

6
Goals for a Pediatric Research Network
  • 1. To improve health outcomes by implementing
    research advances
  • (Connect basic scientists, clinician-scientists
    and health practitioners)
  • 2. To take advantage of the Canadian health care
    system
  • (Marry national health care system with
    entrepreneurial science system)
  • 3. To improve funding for pediatric research
  • (Create effective lobby for child health
    research)

7
Goals for a Pediatric Research Network
  • 4. To establish and develop research partnerships
  • (Enable collaboration through existing networks
    present at this meeting, among others)
  • 5. To enlist provincial partnerships
  • (Allow each centre to obtain support from its
    province)
  • 6. To spread a climate of research throughout the
    country
  • (Make all institutions partners in research)
  • 7. To improve support to existing networks
  • (Create infrastructures common to all networks)

8
Use of new resources
  • Personnel
  • Salaries of investigators
  • Enhanced national training programs
  • Infrastructure
  • Specific research support (CIUs, CEUs, data
    bases)
  • Indirect costs
  • Capital projects

9
First step development of a national child
health clinical research network
  • Components of Clinical Research Support
  • Clinical Investigation Unit/Clinical Research
    Centre
  • Clinical Trials Consortium
  • Health Services, Economics and Policy/Advocacy
    Research
  • Data Management
  • Knowledge Transfer
  • Pediatric Clinical Research Institutional Support
    and Oversight

10
1. Clinical Investigation Unit/Clinical Research
Centre
  • Local, regional, national and/or virtual
  • Some or all of
  • bed space, exercise physiology, research
    pharmacy, access to imaging, pool of specialized
    personnel, behavioural research unit, etc.

11
2. Clinical Trials Consortium
  • Work with existing groups or develop new program
  • Provide methodological support, standardized
    contracts, ethics, data management, coordinated
    oversight
  • Network of individuals with similar roles to
    create standard operating procedures, develop
    education and training
  • Opportunity to attract funding
  • Link to industry

12
3. Health Services, Economics and Policy/
Advocacy Research 4. Data Management 5.
Knowledge Transfer 6. Clinical Research
Institutional Support and Oversight (Harmonizatio
n of research ethics boards, contracts, policies
and procedures re CTAs, continuing review)
13
The Sick Kids Clinical Research Pathway
CLINICAL
RESEARCH
Clinical Research Secretariat
Medical Advisory Committee
PRINCIPAL INVESTIGATOR
Clinical Research Office
Clinical Departments
STUDY MANAGEMENT
DISSEMINATION
SCIENCE
OVERSIGHT
APPROVALS
  • Health Care Team
  • - Clinical Practice
  • - Rounds
  • Research Subjects
  • Patients
  • Individual Results
  • Summary Results

Education Study Audit Monitoring
Division / Dept Clinical Services Clinical
Program
Patients Patient Care policy Safe Location
Clinical Department Research Directors
Clinical Research Centre (Nursing, Beds,
Exercise Lab) Staff Education Template
SOPs Study Budgets Data Management
Biostatistics (CRSU)
Study Design
Grants Contracts
(Clinical Research Support Unit CRSU)
Peer Scientific Reviews
  • Colleagues
  • - Conferences
  • - Peer review journals
  • Public
  • Advocacy Groups
  • Granting Agencies
  • Media

HEALTH CANADA ( / or FDA )
HEALTH CANADA ( / or FDA )
RESEARCH ETHICS BOARD
RESEARCH ETHICS BOARD
14
NIH Regional Translational Research Centers (RTRC)
  • Phase 1 3 Million in 2005 for 20 grants to
    conceptualize/design three models of RTRCs
  • regional centres with clinical research services
    (e.g. protocol design, data management/biostatisti
    cs, regulatory including Good Clinical Practices
    and Good Laboratory Practices, REB, subject
    recruitment, pilot project support, staff)
  • core laboratory technology centres (e.g, imaging,
    animal toxicology, real time PCR, genetic and
    microarray statistical support, pharmacokinetics,
    including LC-MS)
  • hybrid of regional and core
  • Phase 2 Infrastructure for translational
    research (RFP in 2006 for 8-10 RTRC worth 27
    Million)

15
Questions regarding a national child health
research network
  • Are there sciences/clinical problems particular
    to children? (if Childrens hospitals dont study
    them, no one else will)
  • Are there competitive advantages to coordinating
    research at pediatric centres?
  • What approaches would work best to enlist all
    partners in our common objectives?
  • What measures (scientific or other) could be used
    to gauge success of such a Network?

16
Next steps to develop the clinical research
network
  • Receive endorsement from this group
  • Each centre will establish its needs and
    participation in network
  • Begin to implement aspects that require little
    money identify local lead individuals
  • Compete for CIHR/CFI RFPs when they are announced
  • Write a full application
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