Evidence map›Paper›PMID 42371863›Full record

ArticlePublic health genomics2026

Optimizing Reporting and Outreach for Surveillance and Risk-Reducing Surgeries for Cancer Genetic Predisposition: Findings of a Workshop Organized by the International Cascade Consortium.

Bardha Citaku-Qerimi, Hanna Yttring, Sofia E Andersson, Margreet G E M Ausems, Sivia Barnoy, Maria Caiata-Zufferey, Deborah Cragun, Efrat Dagan, Marleah Dean, Katrina R Ellis and 19 more

Abstract read
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In one paragraph

Article in Public health genomics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

29 authors.

Bardha Citaku-QerimiDepartment of Clinical Research, University of Basel, Basel, Switzerland.
Hanna YttringDivision of Oncology, Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
Sofia E AnderssonRegion Västerbotten, The Federation of Cancer Centers North, Umeå University, Umeå, Sweden.
Margreet G E M AusemsDivision Laboratories, Department of Genetics, Pharmacy and Biomedical Genetics, University Medical Center Utrecht, Utrecht, The Netherlands.
Sivia BarnoyDepartment of Nursing Sciences, School of Health Professions, Tel Aviv University, Tel Aviv, Israel.
Maria Caiata-ZuffereyDepartment of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland (SUPSI), Manno, Switzerland.
Deborah CragunCollege of Public Health, University of South Florida, Tampa, Florida, USA.
Efrat DaganFaculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel.
Marleah DeanDepartment of Communication, University of South Florida, Tampa, Florida, USA.
Katrina R EllisSchool of Social Work, University of Michigan, Ann Arbor, Michigan, USA.
Lea GodinoIRCCS AOUBO, Medical Genetics Unit, University of Bologna, Bologna, Italy.
Senada HajdarevicRegion Västerbotten, The Federation of Cancer Centers North, Umeå University, Umeå, Sweden.
Ylva HeymanDivision of Oncology, Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
Sue KimCollege of Nursing, Yonsei University, Seoul, Republic of Korea.
Fred H MenkoDepartment of Clinical Genetics, The Netherlands Cancer Institute, Amsterdam, The Netherlands.
Carla PedrazzaniDepartment of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland (SUPSI), Manno, Switzerland.
Helle V PetersenMedical Department, Zealand University Hospital, Roskilde, Denmark.
Amicia PhillipsDepartment of Clinical and Biomedical Sciences, University of Exeter, Exeter, UK.
Susanna PusaDepartment of Nursing, Umeå University, Umeå, Sweden.
Charité N RickerMedical Oncology, University of Southern California, Los Angeles, California, USA.
Anna RosénDepartment of Diagnostics and Intervention, Umeå University, Umeå, Sweden.
Meghan UnderhillSchool of Nursing, University of Rochester, Rochester, New York, USA.
Pamela GanschowCancer Center, University of Illinois Chicago, Chicago, Illinois, USA.
Elena M StoffelInternal Medicine, Gastroenterology, University of Michigan, Ann Arbor, Michigan, USA.
D Gareth EvansGenomic Medicine, University of Manchester, Manchester, UK.
Joanne NgeowLee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore.
Tuya PalVanderbilt-Ingram Cancer Center, Vanderbilt University, Nashville, Tennessee, USA.
Heather HampelDivision of Clinical Cancer Genomics, Department of Medical Oncology and Therapeutics Research, City of Hope National Medical Center, Duarte, California, USA.
Maria C KatapodiDepartment of Clinical Research, University of Basel, Basel, Switzerland, maria.katapodi@unibas.ch.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionImproving access to genetic testing has increased the number of individuals identified with cancer genetic predisposition. Hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) are key examples of high-risk hereditary cancer syndromes. Ensuring that carriers of germline pathogenic/likely pathogenic variants (GPVs) receive evidence-based risk counseling, surveillance and risk-reducing interventions remains a global challenge. Variations in implementation and reporting of international guidelines across healthcare systems contribute to this problem.

methodsAn international workshop on cancer genetic care, held from March 12 to March 15, 2025, in Switzerland, brought together 40 experts on this topic from 10 countries. The workshop combined evidence-based presentations with expert-led discussions and considered novel strategies, which were synthesized in key discussion points.

resultsParticipants highlighted major inconsistencies in reporting age of initiation and uptake of surveillance, follow-up intervals, and uptake of risk-reducing interventions for carriers of GPVs associated with genetic predisposition to cancer between and within countries. These differences are due to variations in available technology, insurance coverage, and sociocultural attitudes that shape national clinical guidelines. Participants emphasized the need for a standardized approach for reporting surveillance practices, including clear definitions of gene-specific recommendations, timing of follow-up, and alternatives when ideal resources are limited. In addition to these reporting issues, participants also noted the need for sustained outreach for lifelong follow-up surveillance of GPV carriers through digital as well as low-tech approaches.

conclusionStandardized reporting of surveillance and risk-reducing practices across countries may improve the quality and comparability of data in cancer genetic predisposition, reveal gaps in genetic care, and inform outreach strategies for engaging GPV carriers in lifelong cancer risk management.

Indexed as

Genetic Predisposition to DiseaseNeoplasmsColorectal Neoplasms, Hereditary NonpolyposisFemaleGenetic CounselingGenetic TestingHumansRisk Reduction BehaviorAccess to genetic servicesFollow-up genetic careHarmonization of reportingHealthcare systemsHereditary breast and ovarian cancerLynch syndromeSystematic reporting

Identifiers

PMID42371863
PMCPMC13450973

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