Methods
( 27–30 ). The scope of the study, as determined by
2 VOL. ■ NO. ■ / ■ 2025
the study steering committee, encompasses all types of
ectopic pregnancy. It was also decided that the scope
would include causes, prevention, diagnosis, treatment,
and the medium- and longer-term impacts for all types of
ectopic pregnancy.
Research priorities were developed in a 3-stage process
using formal consensus methods advocated by the James
Lind Alliance ( 22 ).
Stage 1: identifying research uncertainties
The first stage was to gather potential research uncertainties.
Research recommendations were extracted from clinical
practice guidelines and Cochrane systematic reviews, perti -
nent to ectopic pregnancy, which were identified by search -
ing bibliographical databases, including CENTRAL, Embase,
International Guideline Library, and MEDLINE, by two mem -
bers of the steering group independent of one another ( 18 ).
Research recommendations were extracted verbatim from
clinical practice guidelines and Cochrane reviews. These
were reviewed by three members of the steering group and
formatted into appropriate research questions (T.A., J.M.N.
D., M.M.). Differences in opinion were resolved by discussion
with the steering group. Stakeholders were recruited through
patient advocacy groups and charities (e.g., the Ectopic Preg -
nancy Trust and Miscarriage Association); professional
women’s health channels such as the Association of Early
Pregnancy Units; hospital research networks; and, finally,
the European Society of Human Reproduction and
Embryology.
Potential research uncertainties were gathered through
an online survey of healthcare professionals, people with
lived experience of ectopic pregnancy, and other stake -
holders. The format of the survey was adapted from a previ -
ous survey developed by the PSP for infertility ( 28 ).They
were recruited through professional networks and patient
advocacy mailing lists. Recruitment was supported by an
active social media campaign. Potential participants received
an explanatory video abstract, a plain language summary,
and survey instructions. Before completing the survey, par -
ticipants provided demographic details, including age, sex,
and geographical location, and information pertaining to
their professional or personal experience of ectopic preg -
nancy. Participants were invited to suggest up to 9 research
questions related to ectopic pregnancy that they considered
unanswered via open-ended questions. Participants were
encouraged to propose up to 3 research questions important
to them on tubal ectopic pregnancy, cesarean section scar
ectopic pregnancy, and rarer types of ectopic pregnancy,
including abdominal, cervical, and ovarian ectopic preg -
nancy. Prompts in the form of example questions were pro -
vided to participants to avoid confusion. To increase
accessibility, there was an option to adapt the font size,
font color, and web page format as well as an embedded
translation option within the Qualtrics software, which
enabled participants to translate the survey into 78 other lan -
guages. The survey was designed to be compatible and user-
friendly on desktops, mobile phones, and other screens to
optimize participation and meaningful engagement. The
initial survey was open for 6 months.
Four members of the steering committee (T.A., J.M.N.D.,
M.O., M.M.) separately collated the data from the systematic
review and online survey. All duplicate questions, ambig -
uous questions, and questions outside the scope of the study
were removed from the long list of potential research uncer -
tainties after discussing within this subset of the steering
group, followed by review from the wider steering commit -
tee, if agreement could not be reached. Questions that had
already been answered by previous research were also
removed. Evidence was gathered with targeted literature
searches within 5 databases (Medline, Cochrane, Embase, CI -
NAHL, and Scopus) in addition to evaluation of international
and national societal guidelines. The data extracted were
then evaluated using the Grading of Recommendations
Assessment, Development and Evaluation system ( www.
gradeworkinggroup.org ) with meta-analyses and systematic
reviews considered the highest-quality evidence. Questions
were deemed to be ‘ ‘unanswered’ ’ if there was not any recent,
high-quality research that generated conclusive results
available.
After this, each member of the steering group was indi -
vidually consulted to assess whether the research question
had been answered. During this stage, the steering group
refined the wording of potential research uncertainties ex -
tracted from the initial survey to improve clarity without de -
tracting from the crux of the research question. Categories
were not identified before this stage. An iterative process,
whereby a thematic review of submitted research uncer -
tainties was undertaken, consequently identified 4 over -
arching categories: tubal ectopic pregnancy; cesarean
section scar ectopic pregnancy; rarer types of ectopic preg -
nancy; and, finally, impact of diagnosis, policy, and organi -
zation of care for ectopic pregnancy. Final allocation of the
individual research uncertainties to these specific categories
was evaluated by the steering group.
Stage 2: interim prioritization
The long list of rationalized research uncertainties was
entered into an interim prioritization survey. Initial survey
participants were invited to participate in the survey by using
the same dissemination channels. Before completing the sur -
vey, participants provided demographic details, including
age, sex, and geographical location, and information per -
taining to their professional or personal experience of
ectopic pregnancy. Participants were invited to select 5
research uncertainties from each thematic category they
considered most important. After the survey had closed,
questions were ranked on the basis of the frequency in which
they had been chosen by participants. The long list of
research uncertainties to be entered into the modified nomi -
nal group technique (NGT) was generated by including 15
questions, which were most frequently selected by interim
prioritization survey participants. The interim prioritization
survey was open for 4 months.
VOL. ■ NO. ■ / ■ 2025 3
Fertil Steril®
Stage 3: final prioritization
The modified NGT is a structured method used for group
decision-making that encourages input from all participants
and ensures equal participation. An adaptation of the orig -
inal NGT was designed to foster a more collaborative process.
Although the modified nominal group method does not rely
on statistical power, it was agreed during a steering commit -
tee meeting that between 15 and 35 people across the various
stakeholder backgrounds would be sufficient ( 21 ). This num -
ber has yielded sufficient results and assured validity in other
settings ( 31 ).
All previous participants of the surveys were invited to
attend either 1 of the 2 virtual interim prioritization work -
shops: the in-person workshop or the final hybrid prioritiza -
tion meeting.
Each workshop was chaired by a member of the study
committee who would first discuss the purpose of the session
as well as set expectations for participants by mapping out
how the process will unfold. Each meeting included a
mixture of healthcare professionals, people with lived expe -
rience of ectopic pregnancy, and other key stakeholders.
During the consensus building workshops, each partici -
pant was asked to choose the research uncertainty that
they considered the most important. After this, the facilitator
called on each participant to present their priorities in a
round-robin format. After each participant shared which
research question was deemed the most important, the chair
facilitated a group discussion of each research uncertainty to
clarify its context and meaning, offering an opportunity to
further combine or refine research uncertainties as needed.
The research uncertainties were prioritized, and at the end
of each meeting, these results were then taken forward to
the next meeting. During the final hybrid prioritization
meeting, the results of the virtual and in-person interim pri -
oritization meetings were presented. The rankings from the 3
groups were aggregated into a single ranking order and pre -
sented to the entire group. Participants were, again, invited
to discuss the ordering of the research uncertainties. By the
end of the discussion, the research uncertainties were placed
in a final ranked order. The final language of each research
uncertainty was formulated by the steering committee to
cede flexibility to future researchers to design studies with
stakeholder consultation; develop feasibility studies with
the objective of establishing interventions; and, finally,
enable researchers to select appropriate outcome measures.
Ethics and funding
Ethics approval was obtained from Monash University (refer -
ence HREC/80401/MonH-2021-284721), and funding for the
project was provided by the Ectopic Pregnancy Trust.
TABLE 1
Characteristics of the participants in a survey to identify the priorities for future ectopic pregnancy research.
Stakeholder demographics
Survey 1
Initial survey
n � 855
Survey 2
Interim prioritization survey
n � 413
Consensus meeting
Final prioritization
n � 37
Stakeholder group, n
People with lived
experience of ectopic
pregnancy
553 289 11
Healthcare professionals
Doctor 42 13 20
Nurse 7 3 3
Sonographer 1 2 1
Other 3 0 2
Prefer not to say 249 106 0
Sex, n
Female 622 312 26
Male 17 5 11
Prefer not to say 216 96 0
Age (y), n
≤ 20 6 1 0
21–30 183 91 7
31–39 356 177 13
40–49 72 38 13
50–59 17 9 4
≥ 60 6 2 0
Prefer not to say 215 95 0
Geographical location, n
Africa 15 1 0
Asia 25 2 1
Australia and New
Zealand
26 7 2
Europe 495 277 32
North America 73 29 2
South America 4 2 0
Prefer not to say 217 95 0
Ajith. Top 10 priorities for ectopic pregnancy research. Fertil Steril 2025.
4 VOL. ■ NO. ■ / ■ 2025
Methods
( 32 , 33 ).
With 855 respondents from 35 countries participating in
the initial survey, 413 respondents from 20 countries partici -
pating in the interim prioritization survey, and 37 partici -
pants from 10 countries included in the consensus
development meetings, the global participation achieved in
this study should secure the generalizability of the results
within an international context. The study included over
800 people with lived experience of ectopic pregnancy, and
they suggested potential research uncertainties during the
initial survey. Their contribution was substantial throughout
the study including sharing their views regarding the impor -
tance of research uncertainties during the interim prioritiza -
tion survey and participating fully in the consensus
development meeting that prioritized the final research pri -
orities. This consensus study is not without limitations.
Consideration should be given to the representativeness of
the study participants. A disproportionate number of re -
sponses were received from participants who identified as
living in Europe (495 participants, 57.9%) during the initial
survey collecting possible research uncertainties. The steer -
ing group devised a strategy to reach out to diverse stake -
holders across different countries; however, the snowball
sampling method may have influenced the demographic
data accordingly. Furthermore, many participants in the
study were female, which is to be expected because women
are most directly affected by ectopic pregnancy, and a signif -
icant proportion of women’s health clinicians are also fe -
male. The initial survey (n = 553, 64.7%) and interim
prioritization survey (n = 289, 70.0%) received many re -
sponses from people with lived experience of ectopic preg -
nancy. This demonstrates success in engaging with a
stakeholder group who has not traditionally contributed to
ectopic pregnancy research. However, it could potentially
skew how the research uncertainties were identified and
prioritized. To counteract this potential impact, the steering
group convened regularly to ensure the scope and objectives
of the study were adhered to in order to produce feasible and
researchable results.
A notable portion of respondents did not provide their
characteristics, which may skew the representation of
various stakeholder groups. This also highlights the limited
engagement associated with web-based surveys. To partici -
pate in the initial survey and interim prioritization survey,
a computer or smart device and internet access were
required, and thus, the findings may include more partici -
pants from higher resource settings. Although the nondisclo -
sure rate of demographic information is comparable to other
similar studies, this could have affected the representative -
ness of the sample, potentially impacting the research uncer -
tainties suggested. Ectopic pregnancy and pregnancy loss are
a deeply personal issue, and some participants may not have
wanted identifiable data (e.g., name, country of origin, and
ethnicity) in the public domain. Appreciating the sensitivity
of this topic, participants were instructed that, although
providing demographic information was useful, it was
entirely optional.
The study followed the consensus methods advocated by
the James Lind Alliance and has been previously used by ten
national and 2 international PSPs within women’s health
( 27 ). The thematic qualitative analysis and categorization
of the initial survey data streamlined the process of formu -
lating indicative research questions for the prioritization
stage of the study. Although this ensured the breadth of
this subject was thoroughly investigated, it could lead to
the nuance of individual priorities being obscured. Meticu -
lous assessment of indicative research questions was neces -
sary to avoid developing broad research questions, which
could be difficult to investigate, and highly specific ques -
tions, which may impede prioritization by spreading a key
theme over multiple research questions. Despite this rigorous
process, there remains uncertainty regarding the optimal
consensus development method to prioritize research uncer -
tainties ( 27 ). Further methodological research is required
regarding the use of different consensus methods to identify
research priorities. Additional contextual information could
potentially have assisted participants in prioritizing the
research uncertainties. Future methodological research
should determine whether additional contextual information
alongside individual research uncertainties should be
offered. This should include the number of people the
research priority impacts upon, the feasibility of answering
the research priority, and the resources required to address
the research uncertainty.
Reflections on the research priorities
The research priorities highlight a fundamental area of
research related to the understanding of the minimum stan -
dard of care that people with ectopic pregnancy should
expect. Establishing a clear, evidence-based standard for
diagnosis, treatment, and follow-up care is critical for
ensuring that people with ectopic pregnancy receive the
best possible care, regardless of their location or healthcare
setting ( 34–36 ). This includes determining the most
effective treatment methods, including expectant, medical,
and/or surgical management, and how to ensure that
patients are managed in a way that improves outcomes and
minimizes risks ( 37–40 ). Research should also evaluate
undergraduate and postgraduate educational interventions,
which could improve healthcare professional education
( 41–47 ). Healthcare professionals should be well equipped
with the latest knowledge and skills to diagnose ectopic
pregnancies early and accurately ( 48–52 ) and to manage
treatment effectively ( 4 ). This could involve updating
training programs, refining clinical guidelines, and
fostering a deeper understanding of the condition across
VOL. ■ NO. ■ / ■ 2025 7
Fertil Steril®
primary and secondary care to improve patient satisfaction
( 53 ).
Another area the research priorities highlight is the
impact of ectopic pregnancy on medium- and longer-term
outcomes, including future fertility and pregnancy outcomes
( 54–60 ). It is important to understand how treatment for
ectopic pregnancy affects long-term reproductive health,
including the risks of recurrence and the likelihood of suc -
cessful future pregnancies ( 61–66 ). Research could provide
invaluable information for patients, enabling them to make
informed decisions about family planning after an ectopic
pregnancy. The role of the fallopian tubes in future fertility
warrants further exploration because tubal damage is a
common cause and consequence of ectopic pregnancy ( 62 ).
Evaluating whether routine testing to assess tubal patency
and function should be enshrined in posttreatment care
plan could help identify those at risk of subfertility or
future complications. Contrary to this, the possible harm of
conducting tubal patency and tubal function testing in all
patients who have been diagnosed with a tubal ectopic
pregnancy has not been rigorously investigated. This
example demonstrates the importance of further research
into this area.
The research uncertainties identified have been designed
to provide a broad foundation for researchers, clinicians, pa -
tients, and funding bodies to consider and pursue without
being too restrictive on the research agenda. A potential
negative impact of this is that the feasibility of undertaking
such research was not considered during the process.
Conversely, we believe that these research objectives have
not been previously addressed due to limited consultation
with patients and limited funding in ectopic pregnancy
research. Developing an international list of research prior -
ities through international consensus could lay the ground -
work for more international collaboration in addressing
these unanswered questions in ectopic pregnancy care.
The research priorities highlight the emotional and psy -
chological impact of an ectopic pregnancy ( 67–70 ). The
experience of an ectopic pregnancy can be deeply
traumatic, often leading to feelings of grief, loss, and
anxiety ( 57 , 71 ). Research focusing upon the psychological
effects of ectopic pregnancy and the development of
supportive care strategies would help address this aspect of
recovery ( 72 , 73 ). Offering mental health support and
counseling as part of a comprehensive care plan could help
alleviate the emotional burden of people with lived
experience of ectopic pregnancy and improve overall
patient well-being ( 74–77 ).
In terms of clinical outcomes, the research priorities
demonstrate the need to evaluate the effectiveness and safety
of different treatment options for less common types of
ectopic pregnancies, such as abdominal, cervical, and inter -
stitial ( 58 , 78–85 ). These rare cases present unique
challenges, and there is currently limited evidence to guide
management decisions ( 86 ). Understanding the best
approach for managing these types of ectopic pregnancies
will ensure that healthcare providers are equipped with the
knowledge to provide optimal care in all ectopic pregnancy
cases ( 13 , 15 , 17 , 87–94 ).
Early detection is crucial for improving outcomes,
particularly in individuals at higher risk ( 95–99 ). Research
into the role of routine early pregnancy ultrasound scans
for individuals who have had previous cesarean sections,
or those with other risk factors, could enhance early
diagnosis and reduce the risk of undiagnosed ectopic
pregnancies ( 100–102 ). Ultrasound screening for those at
higher risk of developing rarer types of ectopic pregnancy
is another area of the research priorities highlighted
because it could help identify problematic pregnancies
earlier and allow for timely intervention ( 103 ).
Understanding the economic cost of ectopic pregnancy is
a vital component of future research ( 104–107 ). The direct
and indirect costs of ectopic pregnancies, ranging
from hospital admissions and treatments to long-term
healthcare needs and lost productivity, have significant im -
plications for local, regional, and national healthcare sys -
tems ( 108–111 ). Research into the economic burden of
ectopic pregnancy could guide resource allocation and help
policymakers make informed decisions about funding and
support for ectopic pregnancy care ( 112 , 113 ).
Addressing these research priorities will not only improve
clinical outcomes and reduce the risks associated with ectopic
pregnancy but also enhance the emotional and psychological
care of patients. By deepening our understanding of ectopic
pregnancy and developing evidence-based approaches to
treatment, healthcare providers can better support individ -
uals through what is often a challenging and potentially
life-changing experience.
Wider context
The study has developed a prioritized list of research uncer -
tainties. The consensus methods have ensured that they
represent the most pressing clinical needs as perceived by
healthcare professionals, people with lived experience of
ectopic pregnancy, and others. Funding organizations and
researchers should consider these top 10 priorities for ectopic
pregnancy research when setting their future research
agenda. The selected list of research uncertainties should
serve as a focus when making decisions regarding the alloca -
tion of limited research resources.
Many of the research priorities will require national and
international collaboration. This is particularly true for
research priorities that are related to the rarer types of ectopic
pregnancy, for example, cesarean scar ectopic pregnancies.
Several countries, including the United Kingdom, have
developed national networks to undertake ectopic pregnancy
research ( 112 ). For example, the GEM3 collaborative, based
in the United Kingdom, has recently complete a multicenter
randomized trial evaluating the combination of gefitinib and
methotrexate to treat tubal ectopic pregnancy ( 114 ). Further
development of national infrastructure in individual
counties is required ( 115 ). Collaboration should spread
beyond national boundaries and develop within an interna -
tional setting. It is hoped that the development of a priori -
tized research agenda could be an important enabler to
deepen international collaboration.
8 VOL. ■ NO. ■ / ■ 2025
Development of generic infrastructure could help foster
collaboration, including the use of minimum data sets,
known as core outcome sets, low-cost data repositories,
and standardized approaches to the reporting of research
( 115 ). A core outcome set has recently been developed for
future ectopic pregnancy trials ( 116 ). Over 150 healthcare
professionals, researchers, and patients have used formal
consensus development methods to identify a core outcome
set for ectopic pregnancy research. Consensus definitions
have also been agreed for individual core outcomes,
including a consensus definition for treatment success, reso -
lution time of ectopic pregnancy, and adverse events. It is
hoped that the core outcome set will provide a generic
research tool to collect outcomes during research and stan -
dardize the approach to research reporting.
Research priorities identified in this study correspond
with research priorities identified by the PSP for Infertility,
including determining the emotional and psychological
impact of infertility, investigating the modifiable risk factors
that cause infertility, and identifying the optimal model of
care ( 28 ). Other similarities exist when considering the
research uncertainties prioritized by the PSP for Endometri -
osis ( 117 ), PSP for Miscarriage ( 118 ), and International Poly -
cystic Ovary Syndrome Network ( 119 ).
Answering the prioritized research questions would
represent a significant step forward for people with ectopic
pregnancy. A blended research strategy should offer the
optimal pathway to improving clinical care and patient out -
comes. We recognize the important role of research that
stems from fundamental science that does not have an imme -
diate clinical application, intellectual curiosity of individual
researchers, and research that is funded by patient organiza -
tions or special interest groups. Perhaps the most important
part of this process of establishing the top 10 research prior -
ities for ectopic pregnancy has been strengthening the rela -
tionships between partner organizations, healthcare
professionals, and people with lived experience of ectopic
pregnancy.
Conclusion
Despite the increasing prevalence of ectopic pregnancy, sig -
nificant research gaps remain. The PSP has highlighted the
top 10 research priorities for ectopic pregnancy, as collec -
tively determined by key stakeholders. Using the rigorous
James Lind Alliance methodology and with the active
involvement of both patients and healthcare professionals,
these research questions were crafted to directly enhance pa -
tient care. Ultimately, we aim for the top 10 research ques -
tions identified in this study to serve as a compelling
rationale for research funding bodies to allocate resources
toward the areas of most critical clinical need.
CRediT Authorship Contribution Statement
Tara Ajith: Writing – review & editing, Writing – original
draft, Visualization, Validation, Software, Resources, Project
administration, Methodology, Investigation, Formal anal -
ysis, Data curation, Conceptualization. Kurt T. Barnhart:
Writing – review & editing, Supervision, Data curation.
Ruth Bender Atik: Writing – review & editing, Supervision,
Data curation. Tom Bourne: Writing – review & editing, Su -
pervision, Data curation. Krystle Chong: Writing – review &
editing, Supervision, Data curation. George Condous:
Writing – review & editing, Supervision, Data curation. Pa -
mela I. Causa Andrieu: Writing – review & editing, Supervi -
sion, Data curation. Grigorios Derdelis: Writing – review &
editing, Supervision, Data curation. Andrew W. Horne:
Writing – review & editing, Supervision, Data curation.
Judith A.F. Huirne: Writing – review & editing, Supervision,
Data curation. Davor Jurkovic: Writing – review & editing,
Supervision, Data curation. Emma Kirk: Writing – review
& editing, Supervision, Data curation. Ernest H.Y. Ng:
Writing – review & editing, Supervision, Data curation. Ri -
cardo F. Savaris: Writing – review & editing, Supervision,
Data curation. Janneke van’t Hooft: Writing – review & ed -
iting, Supervision, Data curation. Madelon van Wily:
Writing – review & editing, Supervision, Data curation. Liesl
de Waard: Writing – review & editing, Supervision, Data cu -
ration. Maria P. Velez: Writing – review & editing, Supervi -
sion, Data curation. Jian Zhang: Writing – review & editing,
Supervision, Data curation. James M.N. Duffy: Writing – re -
view & editing, Writing – original draft, Visualization, Vali -
dation, Supervision, Software, Resources, Project
administration, Methodology, Investigation, Funding acqui -
sition, Formal analysis, Data curation, Conceptualization.
Maria Memtsa: Writing – review & editing, Writing – orig -
inal draft, Visualization, Validation, Supervision, Software,
Resources, Project administration, Methodology, Investiga -
tion, Funding acquisition, Formal analysis, Data curation,
Conceptualization. Munira Oza: Writing – review & editing,
Visualization, Validation, Supervision, Software, Resources,
Project administration, Methodology, Investigation, Funding
acquisition, Formal analysis, Data curation, Conceptualiza -
tion. Ben W. Mol: Writing – review & editing, Supervision,
Project administration, Data curation, Conceptualization.
Declaration of Interests
T.A. has nothing to disclose. K.T.B. has nothing to disclose. R.
B.A. reports that the Miscarriage Association National Direc -
tor of this patient support organization, with no fiduciary in -
terest. T.B. has nothing to disclose. K.C. has nothing to
disclose. G.C. reports MRFF funding outside the submitted
work and consulting fees from GE HealthCare and Samsung.
P.I.C.A. has nothing to disclose. G.D. has nothing to disclose.
A.W.H. reports grant funding from EU, UKRI, NIHR, CSO,
Wellbeing of Women, and Roche Diagnostics outside the
submitted work; lecture fees from Gedeon Richter and Ther -
amex; UK Patent 2217921.1; TSC Chair for PANDA clinical
trial; President-elect of the World Endometriosis Society;
Co-Editor-in-Chief of Reproduction and Fertility ; Trustee
and Medical Advisor to Endometriosis UK; and Specialty
Advisor to the Scottish Government’s Chief Medical Officer
for Obstetrics and Gynaecology. J.A.F.H. has nothing to
disclose. D.J. has nothing to disclose. E.K. reports travel sup -
port from Medtronics meeting on pelvic venous disorders. E.
H.Y.N. has nothing to disclose. R.F.S. has nothing to disclose.
J.v.H. has nothing to disclose. M.v.W. has nothing to
disclose. L.d.W. has nothing to disclose. M.P.V. has nothing
VOL. ■ NO. ■ / ■ 2025 9
Fertil Steril®
to disclose. J.Z. has nothing to disclose. J.M.N.D. has nothing
to disclose. M.M. has nothing to disclose. M.O. has nothing to
disclose. B.W.M. reports research funding from Merck KGaA
outside the submitted work; consulting fees from Merck
KGaA, Organon, and Norgine; and travel support from Merck
KGaA.
SUPPLEMENTAL MATERIAL
Supplemental data for this article can be found online at
https://doi.org/10.1016/j.fertnstert.2025.09.032 .
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