Psoriatic Arthritis (PsA) has a diverse set of symptoms, which can affect people in different ways. There are a number of treatments available but how effective these drugs are at treating the disease can vary, with individuals responding differently to the same drug. The underlying biological reason for this variation in response to the same drug is poorly understood.
The BSR-PsA is a long-term study, which has been set up to investigate the impact of psoriatic arthritis (PsA) on the quality of life of affected individuals over a number of years and to monitor the safety of treatments available for PsA.
Patients are recruited to the study through their local rheumatology clinic. You may be eligible for the study if you are a patient at one of the recruited centres and you:
This study will investigate the long-term impact of psoriatic arthritis on the quality of life of affected individuals, how different types of PsA influence patients in areas like work, driving and function and monitor the safety of novel treatments for PsA. The study will also create a psoriatic arthritis (PsA) biobank that will store a collection of human tissue obtained from people with PsA that will be analysed to determine the underlying reasons why individuals can respond differently to the same drug. This research will hopefully lead to PsA being treated more effectively in individuals in the future, as it may be possible to predict which treatment option will be more successful at treating specific symptoms of PsA.
What is my involvement in this study?
If you are eligible and decide to take part in the study, you will be asked to sign a consent form at your routine clinic appointment. During this appointment, you will be asked to complete a questionnaire about your disease and a member of the local research team will take measurements. We will then ask you to complete an annual follow up questionnaire.
We are particularly interested in certain drugs `biologics’ and other targeted therapies. If you are starting one of these drugs, your consultant will discuss this with you. We would also like you to complete a questionnaire at 3 months and 6 months after starting one of these treatments.
You will also need to keep a record of any time you may spend in hospital, any new medications or hospital referrals or if you or your partner becomes pregnant. You will be given a study diary to record these events.
If you are recruited to the study you may wish to take part in the bioabank, depending on your recruitment centre. If you decide to take part in the bioabank, you will be asked to donate up to 50ml of blood and give a urine sample when starting or changing your treatment, and after 3 months of starting or changing your treatment.
Where can I get more information?
If you would like more information about the BSRBR-PsA, please contact the coordinating centre at the University of Aberdeen on 01224 438052 or via email@example.com.
The British Society for Rheumatology has commissioned researchers at the University of Aberdeen, Epidemiology Group, to co-ordinate the BSR-PsA. https://www.abdn.ac.uk/iahs/research/epidemiology/overview-106.php
Please read this, alongside the BSR‐PsA Patient Information Sheet.
1. What is GDPR
The General Data Protection Regulation (GDPR) (EU) 2016/679 is a regulation in EU law on data protection and privacy. Its main aim is to give control to people over their personal data.
2. How will my data be managed in the BSR‐PsA?
The University of Aberdeen is the sponsor for the BSR‐PsA, a study based in the United Kingdom. We will be using information from you, in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Aberdeen will keep identifiable information about you for 5 years after the study has finished. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained.