Study launch: Investigating genetic and environmental factors in the Faroese IBD cohort—the INCEPTION study

Amanda Vang, Kári Rubek Nielsen, Jóngerð Midjord, Marjun á Fríðriksmørk Berbisá, Ólavur Mortensen, Guðrið Andorsdóttir, Noomi O. Gregersen, Johan Burisch

Research output: Contribution to conferenceAbstractpeer-review


Background: The Faroe Islands constitute a unique genetically and geographically isolated population located in the North Atlantic Ocean.
Previous epidemiological studies have found the worldwide highest
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Abstracts of the 14th Congress of ECCO – European Crohn’s and Colitis Organisation S535
incidence of inflammatory bowel disease (IBD) on the Faroe Islands1
well as high familial aggregation and influence of environmental factors
on disease risk.2
Therefore, the Faroe Islands present a unique opportunity for studying the genetic risk for IBD, environmental modifiers
of disease penetrance, and their joint contribution. The INCEPTION
study aims to investigate this using the Faroese IBD cohort—a nationwide cohort of all IBD patients diagnosed with ulcerative colitis, Crohn’s
disease, and IBD Unclassified since 1960. The foundation of the cohort
is a PROGENY and a Epi-IBD database of clinical, epidemiological,
and genealogical information. We now report on the initial recruitment
stages and experimental pipeline for the INCEPTION study – the first
clinical study involving the Faroese IBD cohort.
Methods: We are recruiting a cross-sectional cohort of ulcerative
colitis patients matched with healthy controls. Samples are being collected for whole-exome-sequencing, 16S rRNA bacterial sequencing,
environmental exposures and nutritional status, along with questionnaires addressing environmental factors, disease activity and
food recall. All human and bacterial sequencing is being performed
on-site at Research Park iNOVA, Tórshavn, Faroe Islands.
Results: We have identified 559 living ulcerative colitis patients in the
Faroese IBD cohort, 327 with age of onset between 18–40. To ensure
genetic associations identified during analysis are due to disease and
not inter-relatedness, all identified patients and healthy controls are
being sorted to exclude first degree relatives. Following sorting, 158
patients were sent an invitation to participate in the study. Since the
project launch meeting on October 24, 2018, informed consent has
been received for 32 patients and over 300 matched-control individuals have been identified through the FarGen project. Blood samples from 32 patients and 300 controls are currently in the routine
whole-exome sequencing pipeline. DNA from 17 stool samples has
been extracted and is biobanked awaiting 16S rRNA library prep
and sequencing. Ethical permission to recruit prospectively has been
granted. We are now working out the logistics of recruitment and
collection of biopsies at the National Hospital of the Faroe Islands.
Conclusions: The first project to focus on the genetic and environmental factors driving the high incidence of IBD with ulcerative
colitis as the prominent disease phenotype within the Faroese population has been successfully launched.
Original languageEnglish
Publication statusPublished - Mar 2019


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