ACORN Core Outcomes Research Network Overview
ACNE CORE OUTCOMES
RESEARCH NETWORK
Information for new members
11/2015
•
Set up in July 2013 with funding from US National
Institute for Health
•
Mission
To develop a universally agreed set of core outcome
measures for use in acne clinical trials
•
Key people: Diane Thiboutot (PI), Jerry Tan, Alison
Layton
•
Principles:
Global representation
Stakeholder participation
Use of consensus-based methods
•
Partners:
COUSIN – Cochrane Skin Group Core Outcome Set Initiative
COMET Initiative – Core Outcomes in Effectiveness Trials
What is ACORN?
What is a core outcome measure set?
•
A
consensus agreed
minimum set
of
validated
outcome
measures for use in
all
acne clinical trials
•
Typically relate to efficacy and safety
•
Easy to use
•
Relevant to people with acne and those who provide treatment
in any setting
•
Universal adoption of the core outcome set permits valid
comparison and pooling of data from individual trials
I
m
p
l
i
c
a
t
i
o
n
s
•
Core outcomes should always be measured using the
instrument/technique included in the core outcome set
•
Core outcomes should always be reported in full
•
When needed, other outcomes can be measured in addition to
the core set
Concept of core sets of
outcomes & measures
Core set – universally agreed and adopted
All possible outcomes –
what is being measured
O
M
All available instruments – ways of
measuring different outcomes
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1 - 3
1 - 4
3 - 6
4 - 8
4 onwards
Timeline for development of core outcome set
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ACORN groups
Group composition/organisation
•
4-8 members
•
At least one patient
•
At least one member of methods group
•
Elected leader who liaises with management
group
•
Leader to draft one page mission statement
•
Project groups to work from protocol drawn
up by members –
protocol to be reviewed
externally by COUSIN and internally by management
team
Group communications
•
Schedule of telecons within and between groups
(every 6-8 weeks)
•
Leaders of each group to hold regular telecons
with management team (every 4-6 months)
•
LinkedIn for open discussions/consultations
•
ACORN website for collection/dissemination of
information
•
Twitter for publicity
Stakeholders
•
People with acne
•
Health care professionals
•
Acne researchers in industry and academia
•
Clinical trial support staff in industry and academia
•
Representatives of regulatory agencies
•
Providers of clinical research services
•
Dermatology journal editors
Additional team members:
•
People with expertise in relevant methods
•
biomedical informatics
•
use of digital technologies to support research
•
evidence synthesis
•
critical appraisal
•
medical statistics
•
psychometrics
Why join ACORN?
•
Much of the time, money and energy spent on acne clinical
trials is wasted
•
Different outcomes are measured using different methods
•
Reporting standards are low
•
Patient input into the identification of what to measure has
been minimal
•
ACORN gives people with acne, health care professionals
and everyone involved in the conduct of clinical trials an
equal voice
•
Universal adoption of the core outcome set depends on
universal agreement about what to measure and how to
measure it
•
A bigger more diverse team means faster progress!
ACORN (ACNE CORE OUTCOMES RESEARCH NETWORK) was established in July 2013 with the aim of creating a standardized set of core outcome measures for use in acne clinical trials. Led by key individuals such as Diane Thiboutot, Jerry Tan, and Alison Layton, ACORN focuses on global representation, stakeholder participation, and consensus-based methods. The core outcome set includes validated measures related to efficacy and safety, designed to be universally adopted for better data comparison and pooling. The network follows a structured timeline for developing and disseminating these core outcome measures, involving various groups dedicated to systematic review support, domain identification, method development, and patient input. ACORN's goal is to ensure that core outcomes are consistently measured and reported across all acne clinical trials.
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Presentation Transcript
ACNE CORE OUTCOMES RESEARCH NETWORK Information for new members 11/2015
What is ACORN? Set up in July 2013 with funding from US National Institute for Health Mission To develop a universally agreed set of core outcome measures for use in acne clinical trials Key people: Diane Thiboutot (PI), Jerry Tan, Alison Layton Principles: Global representation Stakeholder participation Use of consensus-based methods Partners: COUSIN Cochrane Skin Group Core Outcome Set Initiative COMET Initiative Core Outcomes in Effectiveness Trials
What is a core outcome measure set? A consensus agreed minimum set of validated outcome measures for use in all acne clinical trials Typically relate to efficacy and safety Easy to use Relevant to people with acne and those who provide treatment in any setting Universal adoption of the core outcome set permits valid comparison and pooling of data from individual trials Implications Core outcomes should always be measured using the instrument/technique included in the core outcome set Core outcomes should always be reported in full When needed, other outcomes can be measured in addition to the core set
Concept of core sets of outcomes & measures M O Core set universally agreed and adopted All possible outcomes what is being measured All available instruments ways of measuring different outcomes
Timeline for development of core outcome set YEAR Set-up processes & infrastructure 1 Recruit members & allocate to project teams 1 - 3 Identify core set of outcome domains WHAT TO MEASURE 1 - 4 Develop core set of validated measurement methods HOW TO MEASURE 3 - 6 Disseminate methods 4 - 8 4 onwards Monitor adoption
ACORN groups Systematic review support group Core domains identification group Methods group Management team Patient input group Harmonisation of lesion counting group Information management group Communications group
Group composition/organisation 4-8 members At least one patient At least one member of methods group Elected leader who liaises with management group Leader to draft one page mission statement Project groups to work from protocol drawn up by members protocol to be reviewed externally by COUSIN and internally by management team
Group communications Schedule of telecons within and between groups (every 6-8 weeks) Leaders of each group to hold regular telecons with management team (every 4-6 months) LinkedIn for open discussions/consultations ACORN website for collection/dissemination of information Twitter for publicity
Stakeholders People with acne Health care professionals Acne researchers in industry and academia Clinical trial support staff in industry and academia Representatives of regulatory agencies Providers of clinical research services Dermatology journal editors Additional team members: People with expertise in relevant methods biomedical informatics use of digital technologies to support research evidence synthesis critical appraisal medical statistics psychometrics
Why join ACORN? Much of the time, money and energy spent on acne clinical trials is wasted Different outcomes are measured using different methods Reporting standards are low Patient input into the identification of what to measure has been minimal ACORN gives people with acne, health care professionals and everyone involved in the conduct of clinical trials an equal voice Universal adoption of the core outcome set depends on universal agreement about what to measure and how to measure it A bigger more diverse team means faster progress!
