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GCA Rare Disease Bioresource and GCA phenotyping study - Autoimmune Vasculitis Rare Disease Bioresource and Vasculitis phenotyping study

Safe People

Organisation name

University of Leeds

Organisation ID

grid.9909.9

Applicant name(s)

Ann Morgan

Safe Projects

Project ID

DAA150

Lay summary

In this project we aim to understand what causes different types of vasculitis. Vasculitis is a term used when repeated attacks of inflammation occur in the walls of blood vessels. There are many different types of vasculitis. These are grouped into those affecting mainly large or mainly small blood vessels. For example, small blood vessels are affected in anti-neutrophil cytoplasm antibody-associated vasculitis, while Takayasu arteritis and giant cell arteritis affect large blood vessels, such as the aorta. The severity of vasculitis depends on the type of blood vessel affected, the number of attacks and how the blood vessel responds to inflammation. Tissue damage can occur when inflammation severely limits how much blood can flow through a blood vessel. Reduction in blood flow varies widely between different patients and different types of vasculitis. A key clinical challenge when caring for people with vasculitis is balancing control of the immune system (prevents complications) against over-suppression (leading to infections). Although many new treatments are becoming available, these tend to undergo clinical trials in only one form of vasculitis, whereas patients with all forms of vasculitis may benefit from these new medications. We will analyse multiple types of data generated by this project to understand more about which parts of the immune system are altered in vasculitis and how these change with treatment. Improved understanding will help us find new treatments for vasculitis or allow us to use existing treatments in a different type of vasculitis. We will also see whether some of the tests that are being performed might be helpful in our routine clinical care. These new tests might help us to make a more accurate diagnosis or find out who might respond to different treatments. New tests may also tell us when the immune system has returned to normal and when it is safe to stop treatment.

Request category type

Research

Other approval committees

NIHR BioResource Data Access Committee

Latest approval date

19/10/2022

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

TRE