CommNETS Commonwealth Neuroendocrine
Tumour Group
Research priorities and action plan
November 2015
Contents
Executive summary ............................................................................................................... 2
Background........................................................................................................................... 5
Participants ........................................................................................................................... 7
Delphi Round 1: identifying CommNETS’ research strengths and priorities .......................... 8
Delphi Round 2: ranking CommNETS research priorities .................................................... 10
Delphi Round 3: CommNETS’ finalised research priorities .................................................. 11
Action plan .......................................................................................................................... 12
Feedback on the meeting .................................................................................................... 16
Appendix I: Final research topics ........................................................................................ 19
Appendix 2: Workshop participant contact list ..................................................................... 22
ZEST Health Strategies CommNETS research priorities and action plan
1
Executive summary
The Commonwealth Neuroendocrine Tumour Group (CommNETS) is a collaboration
between neuroendocrine tumour researchers in Canada, Australia and New Zealand. The
group’s first meeting was held in Honolulu on 6-7 November 2015. The purpose of the
meeting was to identify and describe the current needs and gaps in NET clinical and
translational research across the participating countries and internationally.
CommNETS’ research priorities
Ranking
(listed in order
of priority)
Research priority
1.
Biomarkers (prognostic and predictive)
2.
Peptide receptor radionuclide therapy
3.
New investigational drugs/trials for advanced NETs
4.
Functional imaging
5.
Sequencing of therapies for metastatic disease
6.
Pathological classification of NETs
7.
Early diagnosis of NETs
8.
Interventional radiology/Liver-directed therapy
9.
Curative surgery for NETs
Action plan
Working Groups
Working group
Planned activities
Planned outcome
Contacts
Biomarkers
(prognostic and
predictive)
 Identify genomics capacity across
CommNETS


Database
Tissue based
translational
projects
Ben
Lawrence
 Survey of PRRT across countries:
o practices
o protocols
o trials.

Presentations
and paper
potentially for
Journal of
Global Oncology
Bryan
Chan
David
Wyld
 Developing a consensus on protocol

Paper on
establishing
Hagen
Kennecke
 Investigate scope for tissue sharing,
incl. contextual factors and barriers
 Identify common data set fields that
could be used in a future registry
(starting development of a minimum
data set)
Peptide receptor
radionuclide
therapy
ZEST Health Strategies CommNETS research priorities and action plan
2
Working group
Planned activities
Planned outcome
development
New
investigational
drugs/trials for
advanced NETs
 Identifying communication
mechanisms for information sharing
and collaboration that would work
across CommNETS

Endpoints
 Surrogate endpoints

 Defining consistent, achievable
surrogate endpoints
Pathological
classification of
NETs
Shereen
Ezzat
Eva
Segelov
Simron
Singh
David
Chan
Katrin
Sjoquist
and
Fellow

 Share synoptic reporting format across
CommNETS

Developing a
peer-reviewed
journal
manuscript on
changing
classifications,
including thoracic
NETS
Sylvia
Asa

Participation in
nd
2 INCA survey
Siobhan
Conroy

Potential
International
patient Delphi
supported by
INCA
 Further work on pathological
classification of rectal NETS, thymic
NETS and gastric NETS
 Further analysis of the International
Neuroendocrine Cancer Alliance
(INCA) international survey data, for
specific insights relevant to
CommNETS countries
 Survey of patients about the
symptoms they experienced that
weren’t diagnosed/addressed (relates
to endpoints working group as well)
Interventional
radiology
protocols for a
new PRRT
centre
AGITG/NCIC/
other joint
participation in
established/plan
ned clinical
trials. Start with
existing trials
e.g. NABNEC
Presentations
and publications
on process of
development
and validation of
surrogate
endpoint tool
Developing an
expert statement
on endpoints
 Patient centred endpoints
 Work with patient groups to identify
symptoms and symptom scores that
are most meaningful (patient centred
outcomes that matter, investigating
scope for )- maybe by a second
INCA patient survey
 Focus on things that can be
progressed quickly in relation to
pathological classification
Early diagnosis
of NETs
Contacts
 Identifying interventions for
comparative trials/studies, e.g. TAE
and radioembolisation

Clinical
trial/registry
Simron
Singh
Chris
Jackson
Simron
Singh
TBC
 Increasing overall numbers through
multi-centre trials across CommNETS
ZEST Health Strategies CommNETS research priorities and action plan
3
CommNETS (general)
CommNETS
Planned activities
Contacts
General
principles
 Not focusing on guideline development
Apply for
funding for
CommNETS
project officer
 Enhancing representation within countries and expanding
involvement to other countries with similar service
systems/NETS-related research challenges
 Expanding involvement of consumers in the CommNETS
group
 Expanding involvement of surgeons in the CommNETS
group
 Ensuring the ongoing involvement of existing participants
(first opportunity for involvement)
 Not becoming too large a group, to minimise
administrative burden and ensure effective working
relationships based on goodwill and interest
Dissemination
 Develop a peer-reviewed journal manuscript on the
outcomes of the Delphi process
 Develop 3 abstracts for the European Neuroendocrine
Tumor Society conference:
o formation of CommNETS (SS)
o Delphi (ES)
o current trials analysis (DC)
Future meetings
 CommNETS 2016 meeting to be held in Honolulu
Thursday 10 and Friday 11 November 2016
Eva Segelov
Simron Singh
David Chan
Eva Segelov
Simron Singh
 CommNETS working groups meeting and dinner at the
eNETS conference Wednesday 9 March 2016; also
meetings at ASCO and ESMO
Future
directions
 Establishing website, contact list, newsletter
 Consider auspice arrangements for CommNETS
 Investigate
o development of animal research models of NETS
o the role patient and consumer advocacy can play in
CommNETS
o facilitating exchanges and visits
Eva Segelov
Simron Singh
Potential
project officer
Feedback received
Thirty-one participants completed the evaluations survey. 93% reported being satisfied or
very satisfied with the meeting. 87% reported that they would like to see a Delphi process or
similar research undertaken in advance of next year’s CommNETS meeting. The things that
were described as making the CommNETS meeting different to other meetings were:

enthusiasm and collegiality

the size of meeting

interactivity

knowledge exchange

facilitation and consensus process

NETS focus

the Delphi process before the meeting
ZEST Health Strategies CommNETS research priorities and action plan
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Background
The Commonwealth Neuroendocrine Tumour Group (CommNETS) is a new collaboration
between neuroendocrine tumour researchers in Canada, Australia and New Zealand. The
group’s first meeting was held in Honolulu on 6-7 November 2015. The purpose of the
meeting was to identify and describe the current needs and gaps in NET clinical and
translational research across the participating countries and internationally.
In advance of, and during, its first meeting CommNETS undertook a three-round Round
Delphi process. The purpose of the Delphi process was to identify and develop consensus
about neuroendocrine tumour research priorities within CommNETS.1,2 The first two rounds
of the Delphi process were conducted through online surveys, and the third and final round
was at the CommNETS meeting.
Figure 1: CommNETS delegates participating in the final round of the Delphi process
There were 203 participants in the Round 1 Delphi online survey and 132 participants in
Round 2. Sixty-five percent of Round 1 participants completed round 2, which is described in
greater detail in the section on participants below. Forty-nine delegates participated in the
third and final round of voting on priorities during the CommNETS meeting.
1
Hasson, F., Keeney, S., & McKenna, H. (2000). Research guidelines for the Delphi survey technique. Journal of advanced
nursing, 32(4), 1008-1015.
2
De Villiers, M. R., De Villiers, P. J., & Kent, A. P. (2005). The Delphi technique in health sciences education research. Medical
teacher, 27(7), 639-643.
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The Delphi process allowed CommNETS to demonstrate:

a consensus about CommNETS’ research priorities

a robust, defensible process by which the priorities were developed

the involvement of both patients/consumers in developing CommNETS’ research
priorities.
The CommNETS Delphi process has differed from many Delphi processes by including
researchers as well as consumers, family members and carers. Delphi processes typically
include a smaller number of subject matter experts, usually ranging between 10 and 30
participants. The patient/consumer perspective is rarely represented in Delphi processes,3
and where they are they are often separated into distinct groups or panels.4 This highlights
the inclusiveness and reach of the approach CommNETS has taken.
Figure 2: CommNETS delegates
3
Pietersma, S., de Vries, M., & van den Akker-van, M. E. (2014). Domains of quality of life: results of a three-stage Delphi
consensus procedure among patients, family of patients, clinicians, scientists and the general public. Quality of Life
Research, 23(5), 1543-1556.
4
Reavley, N. J., Ross, A., Killackey, E. J., & Jorm, A. F. (2012). Development of guidelines to assist organisations to support
employees returning to work after an episode of anxiety, depression or a related disorder: a Delphi consensus study with
Australian professionals and consumers. BMC Psychiatry, 12(1), 135.
ZEST Health Strategies CommNETS research priorities and action plan
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Participants
The Round 1 online survey had 203 participants. The Round 2 online survey was only open
to people who had participated in Round 1 and had 132 participants. This means that 65%
of those participating in Round 1 completed Round 2. The survey completion rate for Round
1 was 61% and 70% for Round 2. Round 3 included the 49 delegates attending the
CommNETS meeting, who had participated in the previous two rounds.
The breakdown of participants was similar between the Round 1 and Round 2 surveys.
Researchers and health professionals made up a higher proportion of delegates who
attended the CommNETS meeting and participated in Round 3. Of the 48 participants at the
meeting 23 were medical oncologists, 5 were endocrinologists, 4 were pathologists, 4 were
nuclear medicine, 3 were surgeons, 3 were radiologists and 6 were from other groups.
Figure 3: Participants by role
93.75%
100%
Round 1 (n=142)
80%
64%
68%
Round 2 (n=103)
60%
Round 3 (n=48)
40%
30%
28%
20%
6.12%
6%
4%
0%
0%
Researchers and health
professionals
Patients and consumers
(including consumer
organisations)
Other (mostly family members
and carers)
The distribution of the participants’ countries was similar across both Round 1 and Round 2
surveys, though there was a higher proportion of delegates from New Zealand who attended
the CommNETS meeting and participated in Round 3 (see figure below).
Figure 4: Participants by country
60%
52%
50%
Round 1 (n=203)
46%
Round 2 (n=100)
38%
40%
36%
32%
Round 3 (n=49)
33%
29%
30%
17%
20%
18%
10%
0%
Canada
Australia
New Zealand
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Delphi Round 1: identifying CommNETS’ research
strengths and priorities
The purpose of the Round 1 Delphi survey was to identify CommNETS’ research strengths
and to identify any research priorities or topics that were not relevant for ranking in Round 2.
Relative research strengths
The Round 1 survey asked participants to compare CommNETS' relative research strengths
with the U.S.A. and Europe. Several areas of relative strength were highlighted, including:

Surgery Cross-sectional imaging (CT, MRI)

Functional imaging (PET, Octreoscan)

Peptide Receptor Radionuclide Therapy (PRRT, e.g. Lutate)

Management of rural patients (living >2 hours drive away from major NET centre)

Multi-disciplinary care and coordination
The two areas that were rated as not being relative research strengths were:

Biobanking/translational research

New investigational drugs/trials for advanced NETs
Research priorities (researchers and patients)
The research priorities both consumers and researchers identified in the Round 1 survey
were:
• Biomarkers that tell us about prognosis
• Biomarkers that tell us whether a particular treatment will be effective
• Curative surgery for NETs
• Functional imaging (PET, octreoscan)
• Interventional radiology/Liver-directed therapy (e.g. TACE, SIRspheres)
• New investigational drugs/trials for advanced NETs
• Sequencing of therapies for metastatic disease Peptide receptor radionuclide therapy
(PRRT, e.g. Lutate)
• Coordination of care pathways for NET patients Managing physical symptoms of NETs
patients (e.g. diarrhoea, flushing)
Importantly, there were no areas of research that were clearly rejected as priorities.
ZEST Health Strategies CommNETS research priorities and action plan
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Figure 5: CommNETS delegates workshopping research priorities
Research topics (researchers only)
There was agreement between researchers about the importance of most of the 52 research
topics included in the Round 1 survey. The research topics related to specific research
practices such as the way research is conducted, specific therapies and research questions.
Agreement for purposes of this Delphi process was where more than 80% of participants
agreed, which is consistent with the threshold set for other Delphi processes.5 Agreed
research topics were then included in the Round 2 survey for prioritisation. Topics that less
than 80% of researchers agreed with were excluded from prioritisation in the Round 2
survey, because the rating indicated a lack of consensus about the importance of the topic.
5
For example Pinnock H et al. (2012) International Primary Care Respiratory Group (IPCRG) e-Delphi exercise, Primary Care
Respiratory Journal, 21(1): 19-27.
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Delphi Round 2: ranking CommNETS research
priorities
The purpose of the Round 2 Delphi survey was to rank research priorities and research
topics. The top 10 research priorities ranked in Round 2 are set out in the table below. The
research topics were also ranked by researchers (see Round 3 for the final prioritised list).
Table 1: CommNETS Top 10 research priorities at the end of Round 2 (includes researchers
and patients, n=103)
Order
of
priority
Mean ranking*
Standard
Deviation
Biomarkers that tell us whether a particular
treatment will be effective
Biomarkers that tell us about prognosis
4.5
3.6
5.8
4.3
3
New investigational drugs/trials for advanced
NETs
6.2
3.9
4
Sequencing of therapies for metastatic disease
7.1
4.6
5
7.2
4.0
6
Peptide receptor radionuclide therapy (PRRT, e.g.
Lutate)
Early diagnosis of NETs
7.8
6.2
7
Functional imaging (PET, octreoscan)
8.3
4.1
8
Curative surgery for NETs
9.0
4.9
9
Interventional radiology/Liver-directed therapy
(e.g. TACE, SIRspheres)
Pathological classification of NETs
9.2
3.7
9.5
4.9
1
2
10
Priority areas (n=103)
* Ranked between most important (1) to least important (17). Lower number indicates higher priority.
Differences between researcher and patient priorities6
The ranking of priorities between researchers and patients was broadly similar. The notable
exception was early diagnosis of NETs, which patients ranked as a markedly higher priority
than health professionals and researchers (mean ranking of 4.0 for consumers, 9.6 for
researchers). Early diagnosis of NETs was consumers’ highest rated priority.
Curative surgery for NETS was also rated as a higher priority by consumers than
researchers (mean ranking of 7.2 for consumers and 9.9 for researchers).
6
The “other” category was excluded from this analysis because it included people who could fit into
either researcher or consumer categories. The four “other” participants in Round 2 included a family
member, a carer, a health professional trainer, and a support group facilitator.
ZEST Health Strategies CommNETS research priorities and action plan
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Delphi Round 3: CommNETS’ finalised research
priorities
The purpose of the third round of the Delphi process was to deliberate on and finalise
CommNETS’ research priorities.
Final research priorities
The 49 CommNETS delegates deliberated the importance of each priority through a 1 ¾
hour group work process, considering:

importance

feasibility

relevance in COMMNETS

consumer/patient perspective.
Following this group work delegates voted on final priorities. The final ranking of priorities
changed somewhat between Rounds 2 and 3, shown in Table 2 below.
Table 2: CommNETS final research priorities (ranked by meeting participants, n=49)
Final ranking
(listed in
order of
priority)
Research priority
Number of
7
votes
Previous
ranking after
Round 2
1
Biomarkers (prognostic and predictive)
48
1 and 2
2
Peptide receptor radionuclide therapy
24
5
New investigational drugs/trials for advanced
NETs
18
3
3
4
Functional imaging
15
7
5
Sequencing of therapies for metastatic disease
14
4
6
Pathological classification of NETs
13
10
7
Early diagnosis of NETs
11
6
8
Interventional radiology/Liver-directed therapy
4
9
9
Curative surgery for NETs
0
8
8
Final research topics
The research topics were ranked using a similar process of deliberation and voting.
Delegates considered the importance, feasibility, relevance and consumer perspective of 26
research topics over two hours before voting on them. The final research priorities are listed
in Appendix I.
7
Participants in Round 3 could assign up to three votes.
Two categories relating to biomarkers were merged during group work deliberations: biomarkers that
tell us whether a particular treatment will be effective, and biomarkers that tell us about prognosis.
8
ZEST Health Strategies CommNETS research priorities and action plan
11
Action plan
Following the final round of voting and prioritisation, CommNETS delegates formed working
groups for each of the research priorities identified. Each working group looked at research
opportunities aligned to the priority, considering:

key research questions/topics

goal/what we are trying to achieve

avenues for research funding

models for collaborations

communication and knowledge sharing mechanisms
Figure 6: CommNETS working groups developing action plans
Following this group work an action plan was developed, which is outlined in Tables 3 and 4
below.
ZEST Health Strategies CommNETS research priorities and action plan
12
Table 3: CommNETS action plan – working groups
Working group
Planned activities
Planned outcome
Contacts
Biomarkers
(prognostic and
predictive)
 Identify genomics capacity across
CommNETS


Database
Tissue based
translational
projects
Ben
Lawrence
 Survey of PRRT across countries:
o practices
o protocols
o trials.

Presentations
and paper
potentially for
Journal of
Global Oncology
Bryan
Chan
David
Wyld
 Developing a consensus on protocol
development

Hagen
Kennecke
Shereen
Ezzat
New
investigational
drugs/trials for
advanced NETs
 Identifying communication
mechanisms for information sharing
and collaboration that would work
across CommNETS

Endpoints
 Surrogate endpoints

Paper on
establishing
protocols for a
new PRRT
centre
AGITG/NCIC/
other joint
participation in
established/plan
ned clinical
trials. Start with
existing trials
e.g. NABNEC
Presentations
and publications
on process of
development
and validation of
surrogate
endpoint tool
Developing an
expert statement
on endpoints
Developing a
peer-reviewed
journal
manuscript on
changing
classifications,
including thoracic
NETS
Sylvia
Asa
 Investigate scope for tissue sharing,
incl contextual factors and barriers
 Identify common data set fields that
could be used in a future registry
(starting development of a minimum
data set)
Peptide receptor
radionuclide
therapy
 Defining consistent, achievable
surrogate endpoints
Pathological
classification of
NETs
 Patient centred endpoints
 Work with patient groups to identify
symptoms and symptom scores that
are most meaningful (patient centred
outcomes that matter, investigating
scope for )- maybe by a second
INCA patient survey

 Share synoptic reporting format across
CommNETS

 Further work on pathological
classification of rectal NETS, thymic
NETS and gastric NETS
 Focus on things that can be
progressed quickly in relation to
pathological classification
ZEST Health Strategies CommNETS research priorities and action plan
Eva
Segelov
Simron
Singh
David
Chan
Katrin
Sjoquist
and
Fellow
Simron
Singh
Chris
Jackson
13
Working group
Planned activities
Planned outcome
Contacts
Early diagnosis
of NETs
 Further analysis of the International
Neuroendocrine Cancer Alliance
(INCA) international survey data, for
specific insights relevant to
CommNETS countries

Participation in
nd
2 INCA survey
Siobhan
Conroy

Potential
International
patient Delphi
supported by
INCA
 Survey of patients about the
symptoms they experienced that
weren’t diagnosed/addressed (relates
to endpoints working group as well)
Interventional
radiology
 Identifying interventions for
comparative trials/studies, e.g. TAE
and radioembolisation

Clinical
trial/registry
Simron
Singh
TBC
 Increasing overall numbers through
multi-centre trials across CommNETS
Table 4: CommNETS action plan – CommNETS (general)
CommNETS
Planned activities
Contacts
General
principles
 Not focusing on guideline development
Apply for
funding for
CommNETS
project officer
 Enhancing representation within countries and expanding
involvement to other countries with similar service
systems/NETS-related research challenges
 Expanding involvement of consumers in the CommNETS
group
 Expanding involvement of surgeons in the CommNETS
group
 Ensuring the ongoing involvement of existing participants
(first opportunity for involvement)
 Not becoming too large a group, to minimise
administrative burden and ensure effective working
relationships based on goodwill and interest
Dissemination
 Develop a peer-reviewed journal manuscript on the
outcomes of the Delphi process
 Develop 3 abstracts for the European Neuroendocrine
Tumor Society conference:
o formation of CommNETS (SS)
o Delphi (ES)
o current trials analysis (DC)
Future meetings
 CommNETS 2016 meeting to be held in Honolulu
Thursday 10 and Friday 11 November 2016
Eva Segelov
Simron Singh
David Chan
Eva Segelov
Simron Singh
 CommNETS working groups meeting and dinner at the
eNETS conference Wednesday 9 March 2016; also
meetings at ASCO and ESMO
Future
directions
 Establishing website, contact list, newsletter
 Consider auspice arrangements for CommNETS
 Investigate
ZEST Health Strategies CommNETS research priorities and action plan
Eva Segelov
Simron Singh
Potential
project officer
14
CommNETS
Planned activities
Contacts
o development of animal research models of NETS
o the role patient and consumer advocacy can play in
CommNETS
o facilitating exchanges and visits
ZEST Health Strategies CommNETS research priorities and action plan
15
Feedback on the meeting
Thirty-one participants ain the CommNETS meeting completed the evaluations survey. 93%
reported being satisfied or very satisfied with the meeting. 87% reported that they would like
to see a Delphi process or similar research undertaken in advance of next year’s
CommNETS meeting.
Figure 7: How satisfied were you with the
CommNETS 2015 meeting?
Figure 8: Would you like to see a Delphi
process or similar research undertaken in
advance of next year's meeting?
Very
dissatisfied
2
17
Dissatisfied
11
4
Yes
Satisfied
27
No
Very
satisfied
Table 5: Which part of the CommNETS meeting did you find most useful and why?
Category
Number of responses in category and sample responses
Interaction/
meeting format
Ten responses, including:
“Incredibly interactive”
“The group work was excellent - quite different to other meetings, and very
productive”
“The informal feel of the meeting facilitated networking and exchange of
ideas, which I felt were the more important achievements of the meeting
rather than the formal aims”
“Delphi, interactions”
Priority setting/
planning
research
Six responses, including:
“Setting of priorities and cooperation between e.g. genomic labs”
“Establishing project groups to work together on a common research goal is
really exciting, and the outcomes will hold huge credibility around the globe,
but also having the time to discuss first was important and could have used
more time on this. It was great to get an idea of what some of the issues
other countries are facing. I think it is a really good match in terms of cultures
working together, really positive experience and I am looking forward to
working on the project”
Information on
NETS, research
and tratements
Six responses, including:
“Discussion regarding the practices and drug access issues in other sites
within and beyond Canada. A chance to formally evaluate the existing
opportunities for research in this field.”
“Good use of time to discuss the trial ideas and priotities”
Networking
Four responses, including:
ZEST Health Strategies CommNETS research priorities and action plan
16
Category
Number of responses in category and sample responses
“Networking. Very rare to meet such a diverse group with a shared interest
and shared problems.”
Diverse
participants
Four responses, including:
“Interesting discussion and learnt about practice/differences in different
centres and countries”
“Multidisciplinary and International sharing of expertise and the spirit of
willing collaboration”
All aspects
Two responses, including:
“The plan of the days was great with plenty of time for all aspects.”
Table 6: Which part of the CommNETS meeting was least useful to you and why?
Category
Number of responses in category and sample responses
Everything was
useful
Eight responses, including:
“It was all productive”
“All aspects were really good”
“Found the whole meeting useful”
Ranking/
prioritisation
process
Six responses, including:
“Ranking of the projects was a bit arbitrary”
“Ranking difficult as the areas of domain were different from each other”
Presentations on
state of research
Four responses, including:
“Formal presentations of published data - already knew that!”
Some specialties
and
sites/centres in
countries not
being well
represented
Three responses, including:
“Only concern was number of sites in Australia not well represented so
reduced usefulness of discussions around local Australian collaboration”
“Surgical input was somewhat less than optimal but that was through no fault
of the organising committee”
Lack of clarity
about the
purpose of the
CommNETS
group
Two responses, including:
“Some of the other participants seemed to be unclear as to what the group
might be able to achieve, and consequently some discussion was in my view
wasted on issues best addressed by other mechanisms. For example I did
not think it was the remit of the group to itself lobby to address provision of
treatments in particular countries particularly in the absence of supporting
clinical trials data.”
Working group
planning
Two responses, including:
“Not having concrete time lines going forward”
Lack of new
research/
information
being presented
One response:
“Not much extra knowledge gained about NETs”
Delphi process
being too rigid
One response:
“The rigidity of the Delphi process. The poll used was predesigned and didn't
include any flexibility for 'other options' which may have been useful to
include. Some options seem to have been lost along the way such as tissue
banking.”
Lack of focus on
One response:
ZEST Health Strategies CommNETS research priorities and action plan
17
Category
funding
Speed dating
session
Number of responses in category and sample responses
“A little difficult to see how the research will result with the differences in
funding of many treatments in the different countries”
One response:
“Speed dating because it was too hard to hear what the other person was
saying.”
Table 7: What made CommNETS different to other meetings you have attended?
Category
Number of responses in category and sample responses
Enthusiasm and
collegiality
Nine responses, including:
“This was one of the best conferences/meetings I've been to. Everyone was
so enthusiastic and keen to discuss - really worthwhile meeting”
“Spirit of mutual respect”
“The workshops and the commitment of the participants. The energy and the
willingness to share and participate was palpable”
Interactivity
Seven responses, including:
“Small(ish) group of diverse fields, particularly with inclusion of pathologists
made for great interactions and opportunities to meet new people. Very
collegiate.”
“Very focussed. Very interactive - no opportunity to fall asleep! Everyone’s
voice was heard”
“The level of interaction was unparalleled”
Facilitation and
consensus
process
Four responses, including:
“Not a series of clinical or scientific presentation, focussed on developing a
research strategy”
“The fact it was a working meeting”
Delphi process
before the
meeting
Three responses, including:
“Delphi process. Clear agenda of discussion re issues and how to address in
collaborative fashion”
“The Delphi process was unique”
Size of meeting
Three responses, including:
“Small size and relaxed atmosphere”
“The relatively small size and informal nature of the meeting. I think to
continue to be unique and productive these qualities need to be preserved in
future meetings.”
Knowledge
exchange
Two responses, including:
“Not simply information and fact sharing, looked at the grey areas that are
opportunities to research.”
NETS focus
Two responses, including:
“Concentrating on questions regarding NETs”
ZEST Health Strategies CommNETS research priorities and action plan
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Appendix I: Final research topics
The way trials are run
Final ranking
(listed in order
of priority)
1
2
3
4
5
Number of
9
votes
Previous
ranking after
Round 2
NET trials endpoint selection including a) Studies
in advanced Grade 1-2 NET to use progressionfree survival as a practical endpoint b) Studies in
advanced Grade 3 NEC to use overall survival as a
practical endpoint c) Trials investigating agents to
control refractory functional symptoms to use
changes in frequency/intensity of those symptoms
as the primary endpoint
NET trial nuclear medicine assessment including
a) Use of mandatory baseline FDG in NETs with
higher proliferative index in prospective clinical
trials b) Use of serial Ga68/FDG PET scanning in
selected trials
60
1
38
2
NET trial pathology assessment including a)
Grading of NETs using Ki67 in all clinical trials b)
Trial protocols specifying the method of Ki67
measurement employed (i.e. eyeballing, manual
counting of 2000 cells or automated) c)
Measurement of both mitotic count and Ki67 in
prospective clinical trials d) Collection of Ki67 data
in trials as an exact percentage rather than grade
alone
NET trial biochemical assessment including
measurement of serial plasma chromogranin A in
trials investigating systemic therapies
36
3
5
5
NET trial radiological assessment to use
ENETs/WHO grading system instead of other
systems
0
4
Number of
9
votes
Previous
ranking after
Round 2
Research topic
Trials that do not involve investigating therapies
Final ranking
(listed in order
of priority)
9
Research topic
1
Research to a) identify biomarkers that point to
early response (or lack of response) from systemic
treatment and b) identify biomarkers that will allow
watchful waiting for low-risk patients with
metastatic NET
52
1
2
National/international tissue banking to accelerate
38
2
Participants could assign up to three votes.
ZEST Health Strategies CommNETS research priorities and action plan
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translational research
Developing and adapting quality of life indices for
use in all medium-large prospective clinical trials
(N>=50)
Trials in resectable NET which investigate the
utility of a) preoperative investigations (Ga68 PET)
to look for metastatic disease b) postoperative
investigations (Ga68 PET, Chromogranin A) to
look for residual disease c) intensive vs nonintensive follow-up in resected NET
26
5
17
3
5
Developing one standardized system for staging
NETs
2
4
6
Review and clarification of the nomenclature of
"neuroendocrine carcinomas" versus "Grade 3
neuroendocrine tumours"
0
6
Number of
9
votes
Previous
ranking after
Round 2
3
4
Trials of systemic therapies
Final ranking
(listed in order
of priority)
Research topic
1
Trials of novel agents in metastatic NET
25
1
2
Further trials comparing PRRT to standard
systemic therapy
25
3
3
Trials of drugs that target actionable mutations
found in each patient’s tumour, given the
heterogeneity in NETs
24
2
4
Trials investigating control of refractory functional
symptoms (diarrhoea, flushing, fatigue) are
warranted
18
12
5
Trials investigating optimal sequencing of agents in
metastatic NET are warranted
15
6
6
Trials of radiosensitizing therapy (e.g.
capecitabine, CAPTEM) with PRRT compared to
PRRT alone
12
5
7
Trials investigating therapies after resection of
NETs (i.e. adjuvant therapies)
7
4
8
Trials to repurpose existing agents in metastatic
NET
7
8
9
Trials investigating optimal dosing of PRRT
(number of cycles, frequency, dose per cycle)
6
7
10
Trials comparing different chemotherapy regimens
in Grade 3 NEC
4
9
11
Trials of non-chemotherapy systemic therapy (eg
antiangiogenic agents) in Grade 3 NEC
1
10
12
Trials comparing chemotherapy to other systemic
0
11
ZEST Health Strategies CommNETS research priorities and action plan
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therapies
Trials of local therapies
Final ranking
(listed in order
of priority)
1
2
3
Number of
9
votes
Previous
ranking after
Round 2
Trials investigating the relative efficacy and
toxicity of different liver-directed therapies (TAE,
TACE, radioembolization, SIRT)
Trials to determine whether gross resection of
oligometastatic disease improves outcomes are
warranted
74
2
27
1
Surgical trials investigating pancreatic, midgut and
bronchial NETs separately
17
3
Research topic
ZEST Health Strategies CommNETS research priorities and action plan
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Appendix 2: Workshop participant contact list
Title
Dr
Dr.
Prof
A/Prof
Dr
Dr
Dr
Dr
Dr
Dr
Dr
Ms
Dr
Dr
Dr
A/Prof
Dr
Dr.
Dr
Dr
Ms
Dr
Dr
Dr
Dr
Dr
Dr
Dr
Dr
A/Prof
Dr
Mr
A/Prof
Dr.
Dr
Dr
A/Prof
Dr
Dr
Dr
First Name
Sylvia
Timothy
Dale
Philip
Cherie
Richard
David
Bryan
Lorraine
Yu Jo
Ruellyn
Siobhan
Chris
Marianne
Shereen
Jon
Rachel
Vallerie
Dean
Kimiora
Avril
Christopher
Hagen
Walter
Grace
Nicole
David
Calvin
Ben
Diana
Marissa
Enrico
Michael
Lucy
Kate
Janice
Nick
Cristin
Reena
Aravind
Last Name
Asa
Asmis
Bailey
Beale
Blenkiron
Carroll
Chan
Chan
Chantrill
Chua
Cockcroft
Conroy
Dey
Elston
Ezzat
Gani
Goodwin
Gordon
Harris
Henare
Hull
Jackson
Kennecke
Kocha
Kong
Kramer
Laidly
Law
Lawrence
Learoyd
Lim
Mandino
Michael
Modahl
Parker
Pasieka
Pavlakis
Print
Ramsaroop
Ravi Kumar
Email
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
ZEST Health Strategies CommNETS research priorities and action plan
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Title
Dr
Dr
A/Prof
Dr
A/Prof
Mr
Dr.
Dr
Dr
Mrs
Mrs
Dr
Dr
First Name
Daniel
Juan
Paul
Maryam
Eva
Ibtehaj
Simron
Katrin
Ana
Kate
Lyndal
Ralph
David
Last Name
Rayson
Rivera
Roach
Sangari
Segelov
Shah
Singh
Sjoquist
Spreafico
Wakelin
Walker
Wong
Wyld
Email
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
ZEST Health Strategies CommNETS research priorities and action plan
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