The Prospective Lynch Syndrome Database

  • Pål Møller
  • Sigve Nakken
  • Eivind Hovig


The aim of the Prospective Lynch Syndrome Database (PLSD) is to store prospectively obtained information on Lynch syndrome (LS) patients to provide knowledge on the natural course of the disease and effects of interventions. Information is currently entered in spreadsheet format and manipulated in Oracle© but may in principle be entered in any suitable format and analysed by any suitable methods. The PLSD outputs annual incidences of cancer in 5-year cohorts in categories. These incidence data are exported as the underlying data for the website, where the user interactively may calculate the lifetime risk for which cancer for any Lynch syndrome patient when indicating the patient’s age, gender and genetic variant. The PLSD may be expanded to include any prospective information on a Lynch syndrome patient. Further functionality may be added for data to be manipulated and output tailored for additional purposes/research projects. The original data stored, or results obtained through manipulating these data inside the PLSD, may be exported for further studies.


Prospective Lynch syndrome PLSD MMR  MLH1 MSH2 MSH6 PMS2 Penetrance Cancer Incidence rate Cumulative risk Survival European Hereditary Tumour Group InSiGHT 


  1. 1.
    Møller P, Seppälä T, Bernstein I, Holinski-Feder E, Sala P, Evans DG, et al. Cancer incidence and survival in Lynch syndrome patients receiving colonoscopic and gynaecological surveillance: first report from the prospective Lynch syndrome database. Gut. 2017;66(3):464–472.Google Scholar
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    Møller P, Seppälä TT, Bernstein I, Holinski-Feder E, Sala P, Gareth Evans D, et al. Cancer risk and survival in path_MMR carriers by gene and gender up to 75 years of age: a report from the Prospective Lynch Syndrome Database. Gut. 2017 Jul 28.–314057
  4. 4.
    Seppälä T, Pylvänäinen K, Evans DG, Järvinen H, Renkonen-Sinisalo L, Bernstein I, et al. Colorectal cancer incidence in path_MLH1 carriers subjected to different follow-up protocols: a Prospective Lynch Syndrome Database report. Hered Cancer Clin Pract. 2017; 10;15:18.Google Scholar
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    Sjursen W, Haukanes BI, Grindedal EM, Aarset H, Stormorken A, Engebretsen LF, et al. Current clinical criteria for Lynch syndrome are not sensitive enough to identify MSH6 mutation carriers. J Med Genet. 2010;47(9):579–85. Epub 2010 Jun 28. PubMed PMID: 20587412; PubMed Central PMCID: PMC2976029.

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Pål Møller
    • 1
    • 2
    • 3
  • Sigve Nakken
    • 2
  • Eivind Hovig
    • 2
    • 4
    • 5
  1. 1.Research Group on Inherited Cancer, Department of Medical GeneticsThe Norwegian Radium Hospital, Oslo University HospitalOsloNorway
  2. 2.Department of Tumor BiologyInstitute of Cancer Research, The Norwegian Radium Hospital, Part of Oslo University HospitalOsloNorway
  3. 3.Surgical Center for Hereditary Tumors, HELIOS University Clinic Wuppertal, University Witten-HerdeckeWuppertalGermany
  4. 4.Institute of Cancer Genetics and Informatics, The Norwegian Radium Hospital, Part of Oslo University HospitalOsloNorway
  5. 5.Department of InformaticsUniversity of OsloOsloNorway

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