{"entity":{"id":"idea-pdac-surveillance-for-every-germline-carrier","kind":"idea","name":"Surveillance for every germline carrier found by universal testing, inside a registry rather than a research exception","aka":[],"tldr":"One patient in twenty with pancreatic cancer carries an inherited gene fault, and most have no family history. Guidelines now say test every patient, which finds relatives who carry it too, but the yearly scans that catch cancer at stage I in carriers are still offered only in research programmes. The proposal is to make surveillance follow the test result automatically.","summary":"Hu 2018 found a pathogenic variant in CDKN2A, TP53, MLH1, BRCA2, ATM or BRCA1 in 5.5 percent of 3,030 patients, 5.2 percent of those without a family history; NCCN and ASCO responded with germline testing for all. The CAPS programme showed what surveillance of carriers achieves: 9 of 10 surveillance-detected cancers resectable (Canto 2018), 7 of 9 at stage I in CAPS5, and across 1,731 people a median survival of 9.8 years for screen-detected cancer against 1.5 years outside surveillance (Dbouk 2022). The 2020 CAPS consensus nevertheless asked that surveillance stay in research settings until benefit was shown. The gap is cascade: the patient is tested, the drug decision (platinum, olaparib) is made, and the relatives who test positive have no routine route to annual endoscopic ultrasound or MRI. PRECEDE (20,000 estimated participants, primary completion December 2030) is the scale-up cohort. The proposal is a national registry that enrols every carrier found by cascade testing into protocolised annual imaging with outcomes reported, so that the evidence the consortium asked for is generated by the service rather than in spite of it. UK access and the EUROPAC programme are on the UK and NHS page.","asOf":"2026-09-24","links":[{"label":"CAPS5: stage and survival (JCO 2022)","url":"https://europepmc.org/article/MED/35704792"},{"label":"CAPS Consortium recommendations (Gut 2020)","url":"https://europepmc.org/article/MED/31672839"},{"label":"ClinicalTrials.gov NCT04970056","url":"https://clinicaltrials.gov/study/NCT04970056"}],"tags":["pancreatic-evidence"],"related":["germline-to-parp","early-detection-roadmap"],"cancers":["pancreatic","brca-palb2-pdac"],"sections":[],"technologies":["germline-testing","pancreatic-surveillance","mri"],"targets":["brca"],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":["gbrca-mutation","germline-vs-somatic"],"trials":["precede"],"people":[],"bottlenecks":["b-hereditary-risk","b-early-detection","b-care-fragmentation"],"keyPapers":["paper-hu-germline-mutations-pancreatic-cancer-risk-jama-2018","paper-canto-caps-long-term-surveillance-gastroenterology-2018","paper-caps-consortium-surveillance-recommendations-gut-2020","paper-dbouk-caps5-stage-survival-jco-2022"],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Registry-based annual surveillance of germline carriers identified by cascade testing yields a stage I proportion above 50 percent among detected cancers and a five-year survival above 60 percent, at fewer than 100 scans per cancer or high-grade lesion found.","rationale":"Universal testing already generates the carriers; the surveillance protocol exists; the missing piece is the service pathway and a registry that turns it into evidence.","test":"National registry with protocolised imaging and pre-specified outcomes (stage distribution, resection rate, survival, scans per lesion, overdiagnosis of low-grade cysts) compared with carriers outside surveillance; PRECEDE and CAPS as external comparators.","maturity":"being-tested-at-scale","actor":"policy","cost":"large","horizonYears":6},"route":"/ideas/idea-pdac-surveillance-for-every-germline-carrier/","neighbours":{"pairing":[{"id":"germline-to-parp","kind":"pairing","name":"Germline BRCA test → adjuvant PARP inhibitor","route":"/pairings/germline-to-parp/"}],"roadmap":[{"id":"early-detection-roadmap","kind":"roadmap","name":"Early detection roadmap: organ screening → blood tests for many cancers","route":"/roadmaps/early-detection-roadmap/"},{"id":"pancreatic-roadmap","kind":"roadmap","name":"Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question","route":"/roadmaps/pancreatic-roadmap/"}],"cancer":[{"id":"brca-palb2-pdac","kind":"cancer","name":"BRCA or PALB2-mutant pancreatic ductal adenocarcinoma","route":"/cancers/brca-palb2-pdac/"},{"id":"pancreatic","kind":"cancer","name":"Pancreatic ductal adenocarcinoma","route":"/cancers/pancreatic/"}],"technology":[{"id":"germline-testing","kind":"technology","name":"Germline (hereditary) testing","route":"/technologies/germline-testing/"},{"id":"pancreatic-surveillance","kind":"technology","name":"High-risk pancreatic surveillance (CAPS / PRECEDE)","route":"/technologies/pancreatic-surveillance/"},{"id":"mri","kind":"technology","name":"MRI","route":"/technologies/mri/"}],"target":[{"id":"brca","kind":"target","name":"BRCA1 / BRCA2 (HRD)","route":"/targets/brca/"}],"term":[{"id":"gbrca-mutation","kind":"term","name":"Germline BRCA mutation (gBRCA)","route":"/terms/gbrca-mutation/"},{"id":"germline-vs-somatic","kind":"term","name":"Germline vs somatic mutations","route":"/terms/germline-vs-somatic/"}],"trial":[{"id":"precede","kind":"trial","name":"PRECEDE","route":"/trials/precede/"}],"bottleneck":[{"id":"b-care-fragmentation","kind":"bottleneck","name":"Fragmented care and guideline gaps","route":"/bottlenecks/b-care-fragmentation/"},{"id":"b-hereditary-risk","kind":"bottleneck","name":"Inherited risk is mostly unidentified","route":"/bottlenecks/b-hereditary-risk/"},{"id":"b-early-detection","kind":"bottleneck","name":"The hardest cancers are found late","route":"/bottlenecks/b-early-detection/"}],"paper":[{"id":"paper-hu-germline-mutations-pancreatic-cancer-risk-jama-2018","kind":"paper","name":"Association Between Inherited Germline Mutations in Cancer Predisposition Genes and Risk of Pancreatic Cancer","route":"/key-papers/paper-hu-germline-mutations-pancreatic-cancer-risk-jama-2018/"},{"id":"paper-caps-consortium-surveillance-recommendations-gut-2020","kind":"paper","name":"Management of patients with increased risk for familial pancreatic cancer: updated recommendations from the International Cancer of the Pancreas Screening (CAPS) Consortium","route":"/key-papers/paper-caps-consortium-surveillance-recommendations-gut-2020/"},{"id":"paper-canto-caps-long-term-surveillance-gastroenterology-2018","kind":"paper","name":"Risk of Neoplastic Progression in Individuals at High Risk for Pancreatic Cancer Undergoing Long-term Surveillance","route":"/key-papers/paper-canto-caps-long-term-surveillance-gastroenterology-2018/"},{"id":"paper-dbouk-caps5-stage-survival-jco-2022","kind":"paper","name":"The Multicenter Cancer of Pancreas Screening Study: Impact on Stage and Survival","route":"/key-papers/paper-dbouk-caps5-stage-survival-jco-2022/"}]}}