Skip to main content
Log in

The establishment of a polyposis register

  • Original Articles
  • Published:
International Journal of Colorectal Disease Aims and scope Submit manuscript

Abstract

Guidelines are presented for the establishment of a regional or national register of patients with familial adenomatous polyposis. The detailed recommendations are based on the work in committees of the “Leeds Castle Polyposis Group” and the “EuroFAP”. The aims of national and regional polyposis registers are discussed, and the stages of development of a register are reviewed: Ascertainment of probands, construction of pedigrees, identification of family members at risk, and screening of members at risk. The problem of data confidentiality is discussed.

Résumé

Les consignes sont présentées pour l'établissement d'un registre Régional ou National des patients avec polypose adénomateuse familiale. Les recommandations détaillées sont basées sur les travaux des comités du “Leeds Castle Polyposis Group” et de “EuroFAP”. Les buts des registres Régionaux ou Nationaux des polyposes sont discutés et les stades de développement du registre sont passés en revu: l'assurance de probande, la construction de l'arbre généalogique, l'identification des familles des membres à risques et l'étude des membres à risques. Le problème de la confidentialité des faits est discuté.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Lockhart-Mummery P (1925) Cancer and heredity. Lancet i:427–429

    Google Scholar 

  2. Bussey HJR (1975) Familial polyposis coli. Family studies, histopathology, differential diagnosis and results of treatment. Johns Hopkins University Press, Baltimore

    Google Scholar 

  3. Alm T (1975) Surgical treatment of hereditary adenomatosis of the colon and rectum in Sweden during the last 20 years. Part I and II. Acta Chir Scand 141:218–227 and 228–237

    Google Scholar 

  4. Bülow S (1987) Familial polyposis coli. A clinical and epidemiological study. Thesis. Dan Med Bull 34:1–15

  5. Gedde-Dahl T, Heim S, Lothe R, Bye R, Geitvik GA, Kyrkjebø HT, Hognestad J, Nygaard K, Bergan A, Olaisen B, Kildal S, Svanes KH (1989) Polyposeprojektet. Nord Med 104:12–15

    Google Scholar 

  6. Vasen HFA, Griffioen G, Offerhaus GJA, Den Hartog Jager FCA, van Leeuwen-Cornelisse ISJ, Meera Khan P, Lamers CBHW, van Slooten EA (1990) The value of screening and central registration of familial adenomatous polyposis. A study of 82 families in The Netherlands. Dis Colon Rectum 33:227–230

    Google Scholar 

  7. Järvinen HJ, Husa A, Aukee S, Laitinen S, Matikainen M, Havia T (1984) Finnish registry for familial adenomatous polyposis coli. Scand J Gastroent 19:941–946

    Google Scholar 

  8. Utsunomiya J (1988) Pathological and genetic aspects of adnomatosis coli in Japan. In: Takebe H, Utsunomiya J (eds.) Genetics of human tumours in Japan. Japan Scientific Society Press, Tokyo, pp 45–62

    Google Scholar 

  9. Neale K, Ritchie S, Thomson JPS (1990) Screening of off-spring of patients with familial adenomatous polyposis: The St. Marks Hospital Polyposis Register Experience. In: Herrera L (ed.) Familial adenomatous polyposis. Alan R Liss, Inc., New York, pp 61–66

    Google Scholar 

  10. Burn J, Chapman P, Delhanty J, Wood C, Lalloo F, Cachon-Gonzales MB, Tsioupra K, Church W, Rhodes M, Gunn A (1991) The Northern region genetic register for familial adenomatous polyposis coli; use of age of onset, CHRPE and DNA markers in risk calculations. J Med Genet 28:289–296

    Google Scholar 

  11. Thomson JPS (1988) Leeds Castle Polyposis Group meeting. Dis Colon Rectum 31:613–616

    Google Scholar 

  12. Herrera L (1990) The Leeds Castle Polyposis Group. In: Herrera L (ed.) Familial adenomatous polyposis. Alan R Liss, Inc., New York, pp 155–158

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Additional information

This paper is based on a report from committees of the “Leeds Castle Polyposis Group” and the “EuroFAP”.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Bülow, S., Burn, J., Neale, K. et al. The establishment of a polyposis register. Int J Colorect Dis 8, 34–38 (1993). https://doi.org/10.1007/BF00341274

Download citation

  • Accepted:

  • Issue Date:

  • DOI: https://doi.org/10.1007/BF00341274

Keywords

Navigation