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NANETS consensus statements guiding clinical practice:
development process & methodology

OVERALL PROCESS

  • Selection of the chairs for the specific consensus statement:
    • Call for nomination (including self-nomination) is sent to NANETS membership
    • Nominations are reviewed by the Guidelines Committee
    • Chairs are nominated by the Guidelines Committee for recommendation to the NANETS board
  • Chairs develop the protocol using the following methodology. The protocol is reviewed
    and approved by the Guidelines Committee.
  • The Chairs and the Guidelines Committee select panelists for the expert panel.
  • The consensus statement is developed following the protocol.
  • The Chairs of the consensus statement sits on the Guidelines Committee as ex-officio
    members.
  • The process if overseen by the Guidelines Committee via regular updates by the Chairs of
    the consensus statement (a checklist based on the protocol developed for the consensus
    statement is used).
  • Manuscript
    • Drafted by the Chairs
    • Reviewed by the steering committee for edits.
    • Circulated to the expert panel for information.
    • Posted for open community feedback.
    • Revised by the Chairs according to feedback.
    • Revised manuscript reviewed by the steering committee for edits and final approval.
    • Revised manuscript circulated to the expert panel for information
    • Approved manuscript submitted to Endocrine-Related Cancer (ERC) or other publishing journal if approved by the guidelines committee.

SELECTION OF TOPICS FOR CONSENSUS STATEMENTS

  • The Guidelines Committee maintains a list of topics for consensus statements. This list includes topics for new guidelines as well as existing guidelines to be assessed for revision (see separate policy regarding guidelines revision). Each year, the list is updated via an open call to NANETS members to suggest topics.
  • Each year, a new NANETS sponsored consensus statement is initiated, with a lifetime of 18 to 24 months (from initiation to publication). At any time, approximately 2 NANETS sponsored guidelines will be ongoing at the same time, at different stages of completion.
  • The topics for consensus statements to be initiated are reviewed by the Guidelines Committee using the existing list of topics.

METHODOLOGY

A modified Delphi consensus procedure is used as a default approach, in an effort to offer standardization across NANETS consensus statements.1,2 If special topics require, the Guidelines Committee may issue special mandates with a different methodology which can then be defined and reviewed in collaboration with the nominated Chairs for that mandate.

When evidence is lacking or debated, the Delphi process offers a systematic way to synthesize the evidence and gather expert opinion with a consensus-based approach.2 The Delphi approach has the advantage to avoid dominance of opinions via anonymity, allow for participants to change their opinions based on feedback from the other participants via the iterative process, and provide controlled feedback.

 

Step 1: Creation of the expert panel

  • See below in “participants” for guidance on how to assemble the expert panel.
  • Each panelist will fill out a participant information and conflict of interest form.


**NANETS role: contact potential participants and collect participants information and conflict of interest forms.

 

Step 2: Defining the scope of the consensus statement

  • Aim: determine topics to be addressed by the consensus statement.
  • The steering committee will generate a preliminary list of topics or clinical scenarios to address.
  • During a first Delphi round, panelists will also be asked what topics should be addressed in the guideline. The aim will be to build an exhaustive list of clinical topics and scenarios to be covered. An open-ended question such as “what topics should be addressed in a guideline regarding TOPIC?” or “what clinical scenarios require guidance in the care of TOPIC?” can be asked.
  • The preliminary list will be edited based on the responses from the panel of experts.
  • A final list of topics to be addressed will be created by the steering committee.

**NANETS role: build and distribute the surveys.

 

Step 3: Literature review

  • Systematic literature reviews will be conducted for each topic to be addressed in the consensus.
    • Use the PICO (population, intervention, comparison, outcomes) format when possible;
    • Summarize the strength of the comparative evidence using the GRADE system.
  • The literature reviews will be summarized to be sent to the expert panel during subsequent Delphi rounds.

**NANETS role: support for librarians to build search strategy, conduct search and summarize results.

 

Step 4: Drafting consensus statements

  • The steering committee will draft statements for recommendations for all topics to be addressed in the guideline.

**NANETS role: support coordination of virtual meetings for the steering committee.

 

Step 5: Rating agreement

  • A series of Delphi survey rounds will aim to reach consensus on the proposed statements.
  • A self-administered web-based survey will be used.
  • The panel of experts will be provided with the summary literature review as well as individual links to access the survey.
  • The panelists will be asked to rate (dis)agreement with each statement using a 5-point Likert scale (from strongly disagree [1] to strongly agree [5]).
  • Anonymized results will be computed by reporting the median rating for each statement and number of panelists per rating level. Consensus will be defined following UCLA-RAND recommendations, adapted to 5-point Likert scale.3 Metrics will be selected by consensus if the median score is 4 or greater and no disagreement is observed. Disagreement will be defined as 50% of experts rating in both extremities of the 5-point scale (1,2, or 4,5).
  • A minimum retention rate of 80% of the expert panel will be required; the data from each round will be analyzed only after >80% of panelists have replied.
  • For each subsequent survey rounds, the panelists will be asked to re-rate the statements for which consensus was not reached during the previous round. For each round, participants will be presented with their rating and the group’s median rating during the previous round.
  • A final round will be held in-person via webinar and videoconference. The list of statements for which consensus has not been reached will be reviewed, discussed, and modified if necessary. A final round of in-person anonymous ranking will take place on those statements.
  • The final guideline will be comprised of the statements for which agreement was achieved.

**NANETS role: build and distribute the surveys. Support statistical analysis.

 

Step 6: Community feedback

The validity of expert consensus methods can be questioned due to manipulation of the processes by organizers, domination of discussions by certain participants, and group pressure for conformity.2 In particular, the purposive sampling approach for Delphi methodology may lead to having participants with unique interest or expertise in the field that may not be generalizable to all care settings. The purposive sampling approach to create the panel of experts is rooted in diversity and inclusion to ensure representativity and generalizability by including experts from different sociodemographic backgrounds, healthcare systems, geographic regions, specialties,
practice settings, and career stages. Nevertheless, to enhance the external validity of the expert consensus statements, we will conclude the process by soliciting community feedback.

  • An open call for reviewers will be distributed through NANETS networks (such as social media groups, society distribution lists and membership, and patient advocacy organizations) for individuals interested in providing feedback on the consensus statement.
  • Interested members of the medical community or the public will have access to the draft guideline and a link to an online survey to provide feedback. They will be asked whether they support the consensus statement and will have the opportunity to provide input. They will have to provide their names and institution (as relevant); anonymous review will not be accepted. This survey will be open for a period of 2-3
    weeks.
  • The survey will ask the question “do you agree with the statements generated by the expert panel?” with a closed answer of yes or no followed by a comment box asking those who answered no to detail what the perceived shortcomings and proposed improvements would be.
  • The results of community feedback will be summarized and then reviewed by the steering committee. Any changes to the statements resulting from the community feedback will be reviewed by the entire panel prior to approval.
  • The comments from the community feedback are considered advisory only and the panel is not bound to make changes based on it. NANETS will not respond to the reviewers or post responses to the comments.

**NANETS role: build and distribute the surveys. Summarize comments of community feedback. Support statistical analysis.

 

PARTICIPANTS

Chairs

  • Two to three co-chairs are selected by the Guidelines Committee.
    • Track-record of clinical and academic expertise in the care of NETs
    • Experience and expertise in the development of consensus statements (such as Delphi, RAND-UCLA, or focus group methodologies)
    • Be a NANETS member
  • Roles & responsibilities:
    • Establish a timeline for completion of the consensus statement for review by the Guidelines Committee, with a planned 18 to 24 months turn-around.
    • Coordinate the selection of the panel of experts with the Guidelines Committee
    • With support from NANETS staff, identify contractors for literature review and statistical analysis, including providing cost estimates.
    • Provide overall leadership, decision-making, guidance, and direction to the expert panel.
    • Draft the protocol (following the below methodology) for review by the Guidelines Committee.
    • Lead with respect for members and staff and without bias for a particular evidence or authors.
    • If needed, assign authors to specific section(s), and not make assignments to members with conflicts of interest (COI) pertinent to a section topic.
    • Lead meetings with staff support.
    • Provide updates to the Guidelines Committee at the regularly scheduled meetings.
    • Ensure that statements reflect best practice based on evidence.
    • Facilitate discussions to achieve consensus among panelists.
    • Respond to queries/suggestions from open community feedback.
    • Review, revise, and fill in gaps as necessary to finalize the manuscript.
    • Complete the consensus statement within assigned timeline to meet deadline for submission to Endocrine-Related Cancers.
    • The co-chairs will share first and senior authorship in the published guideline.

 

Steering Committee

  • A steering committee of 8-10 people will lead and conduct the guideline, under the leadership of the Chairs.
  • The steering committee members will be proposed by the Guidelines Committee in collaboration with the Chairs.
  • Selection criteria:
    • Demonstrate a track-record of clinical and academic expertise specific to the care of NETs.
    • Be a NANETS member.
  • At minimum, one person from each of the following specialties will participate in the steering committee: medical oncology, surgical oncology, endocrinology, nuclear medicine. Additional representation from relevant specialties will be sought based on the specific guideline.
  • Members of the steering committee will be included in the authors byline of the published guidelines.
  • Roles & responsibilities
    • Participate in the creation of the panel of experts.
    • Participate in virtual and in-person meetings to synthesize the results of the literature review, discuss the structure of the guideline, formulate statements, and interpret results of survey ratings.
    • Participate in the selection of topics to be addressed in the guidelines.
    • Critically review the literature review and substantively contribute to the drafting of statements for rating.
    • Respond to Delphi surveys.
    • Review and provide feedback on the initial and revised manuscripts.
    • Provide final approval for the manuscript to be submitted for publication.
    • Provide feedback or input into the development of clinical tools and resources.
    • As needed, interface with the media at the time of guidelines publication and assist NANETS in the development of press releases.

 

Expert panelists

  • A panel will be assembled to create a multi-disciplinary North-American group of experts in the care of NETs for the specific topic of the guidelines. The following representation should be sought, as warranted by the specific topic, including but not limited to medical oncology, surgical oncology, endocrinology, nuclear medicine, radiation oncology, genetics, and gastroenterology.
  • A large panel may be necessary because of the breath of specialties involved care of patients with NETs and to ensure core expertise in all aspects of care covered by the consensus statement.
  • The selected panelists should demonstrate a track-record of clinical expertise specific to the care of NETs.
  • Potential panelists will be identified based on public medical directories and the steering committee and Guidelines Committee’s knowledge of physicians with a practice involving NETs.
  • The sampling will intend to represent community and academic practice settings across North America.
  • For broad guidelines where expertise may be divided across topics to be covered, more than one panel may be created. For example, a panel may be assembled to rate questions pertaining to systemic therapy, and another one for questions pertaining to surgery. This approach can ensure core content expertise for all statements. If this approach is chosen, representative from all specialties are still needed on each panel and no panel can include only one specialty (e.g., a minimum surgical oncology representation will be needed on the systemic therapy panel).
  • Panelists will be included in group authorship on the published guidelines (e.g., NANETS Guidelines Working Group), which is searchable and citable via PubMed.
  • Roles & responsibilities:
    • Respond to Delphi surveys.
    • Participate in virtual panel meetings.
    • Complete a survey at the end of guideline development to submit feedback on the
      process.

 

Patients and service users engagement

The guideline process will include patient and service users engagement, as aligned with the Armstrong framework for enhancing clinical practice guidelines through continuous patient engagement.8

  • Patients are defined as an inclusive term including individuals with personal experience of health issue and informal caregivers (such as family and friends), and service users are defined as laypersons/non-professional service users, including care partners.
  • The specific number of patient and service users partners can be tailored to the needs of the specific consensus statement. It is recommended to have more than one partner to facilitate eliciting their perspectives.
  • Those individuals will be recruited through purposive sampling in partnership with key stakeholders’ and patient advocacy organizations.
  • Those partners will be involved in the development of the consensus statement from the start and throughout the project continuum. Their engagement can be tailored to the topic of the statement, with consideration for the following roles:
    • Review panelists selection, including their conflict-of-interest declaration.
    • Comment on the topics to be addressed in the statements.
    • Participate in voting for rounds of Delphi surveys.
    • Provide feedback on recommendations.
    • Contribute to the development of lay summaries for dissemination of the final statements.
    • Support dissemination of the expert consensus statements.
  • Selection of patient and service users’ partners:
    • A public call for nomination (including self-nomination) is sent through NANETS communication networks, such as membership, patient advocacy organizations, social media, and web tools.
    • Nominations are reviewed by the Guidelines Committee and the Chairs of the consensus statement to select patient and service users’ partners.
  • Compensation: In accordance with The Change Foundation decision tool, direct pay for patients and service users partners is not necessary but other options for recognition are advisable.5 Patients and service users partners will receive gift cards for each year they participate in the development of the consensus statement.

 

Equity, diversity, and inclusion

While meeting the criteria defined above, selection of the Chairs, Steering Committee, and Expert Panelists, should adhere to principles of equity, diversity, and inclusion as presented in the NANETS DEI statement. Participants information will be collected using NANETS membership rosters to produce a DEI map. This map can be reviewed by the Diversity and Membership Committee and the NANETS Board.

 

Knowledge dissemination

Publication:

  • By default, the final consensus statement will be submitted for publication to Endocrine-Related Cancers. In case of rejection from this journal, publication should be sought as Open Access to facilitate unobstructed access to the recommendations.
  • When collaborating with other societies, opportunities for dual publications with the partner society official journal will be considered. This will be included in the memorandum of understanding with the partner society.
  • Exceptions to the default first submission to Endocrine Related Cancers can be sought on a case by case basis by the consensus statement steering committee to be reviewed by the Guidelines Committee and the NANETS Board.

Supporting materials: Clinical and lay summaries can be developed by the Steering Committee and the patient and service users partners, with the support of the NANETS creative team. Those materials can be made available on the NANETS website and referenced as a hyperlink in the publication (if ready at the time of submission).

 

Collaboration with other societies

In case of collaboration with other societies, the protocol development should be done following guidance from both societies’ processes. This is then reviewed by the Guidelines Committee. Costs and resources should be shared between the participating societies and the proportion of costs covered and resources provided by each society determined at the outset of the project. The agreed upon process and resources should be documented in a Memorandum of Understanding between the partnering societies.

 

REFERENCES

  1. Fink A, Kosecoff J, Chassin M, Brook RH. Consensus methods: characteristics and guidelines for use. Am J Public Health 1984;74(9):979 983.
  2. Jones J, Hunter D. Qualitative Research: Consensus methods for medical and health services research. BMJ 1995;311(7001):376.
  3. Fitch K, Berrnstein SJ, Aguilar MD, et al. The RAND/UCLA Appropriatness Method User’s Manual. 2000;
  4. Armstrong MJ, Rueda J-D, Gronseth GS, Mullins CD. Framework for enhancing clinical practice guidelines through continuous patient engagement. Health Expect 2017;20(1):3–10.
  5. Should-money-come-into-it.pdf. Available from: https://ontariocaregiver.ca/wp-content/uploads/2021/06/Should-money-come-into-it.pdf

 

PROCESS SUMMARY

   Steps  Group responsible  Timeline
 1  Identify topic for new consensus statement  Guidelines Committee  Months 1-2
   Update list of topics with annual call  Guidelines Committee   Month 1
   Review and select topic  Guidelines Committee  Month 2
 2  Selection of chairs for consensus statement  Guidelines Committee & Board  Months 3-4
   Open call for nominations  Guidelines Committee  Month 3
   Review of nominations & selection for 
 recommendation to the NANETS Board		  Guidelines Committee  Month 4 
   Approval by the NANETS Board  Board  Months 4-5
 3  Establish support team - librarian and statistician  Consensus Chairs & Guidelines Committee  Months 3-5
 4  Selection of steering committee and panelists  Consensus Chairs & Guidelines Committee  Month 5
 5  Define scope of the statement  Steering Committee  Month 6 
 6  Literature review & summary  Steering Committee  Months 7-9
 7  Drafting statements for scoring  Steering Committee  Months 9-11
 8  Rounds of scoring & parallel analysis  Expert panel  Months 11-14
 9  Finalize consensus statement & initiate manuscript  Steering Committee  Months 15-18
 10  Community feedback  Steering Committee  Months 18-19
 11  Submission for publication  Consensus Chairs  Months 19-20