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UKIBDGC - genetics of prognosis in Crohn's disease and ulcerative colitis

Safe People

Organisation name

University of Cambridge

Organisation ID

grid.5335.0

Applicant name(s)

James Lee

Safe Projects

Project ID

DAA079

Lay summary

The role of genetics in Crohn's disease and ulcerative colitis (collectively termed inflammatory bowel disease or IBD) has been extensively and successfully studied over the past 15 years. There is, however, a growing recognition that genetics is likely to contribute to other important aspects of IBD, including the course that the disease follows after diagnosis and the incidence of serious medication side effects. We have requested the anonymised clinical phenotyping data for patients with ulcerative colitis and Crohn's disease in the IBD BioResource in order to identify subgoups of patients with specific clinical characteristics. For example, patients who have never required any immunomodulatory or biological drugs (and so have mild disease) or others who have required several of these types of drugs (and so are likely to have had more severe disease). By identifying groups of patients with specific clinical characteristics, we will be able to compare their genetic profiles to identify differences in their DNA that might affect the course of disease, or determine whether a patient will respond to a particular therapy. By identifying such genetic variants, we hope to better understand the biological processes that are responsible for these important clinical differences and thereby help personalise treatment to individual patients in the future. These analyses are a major research priority for the UK IBD Genetics Consortium. Better understanding of what drives aggressive / progressive IBD with the potential to identify new therapeutic targets, and/or predict the development of genetic tests to help match patients to the treatment(s) that are best for them.

Request category type

Research

Other approval committees

NIHR BioResource Data Access Committee

Latest approval date

29/04/2021

Safe Data

Dataset(s) name
Data sensitivity level

De-Personalised

Legal basis for provision of data under Article 6

(e) processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

Lawful conditions for provision of data under Article 9

(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

Common Law Duty of Confidentiality

The individual to whom the information relates has consented

National data opt-out applied?

No

Request frequency

One-off

Safe Setting

Access type

Release