BADBIR Participants FAQ
- Q1: What is the BADBIR study hoping to find out?
- Q2: Why have I been asked to join BADBIR?
- Q3: How will my participation help?
- Q4: How many participants are to be recruited?
- Q5: Will my identifiable details be shared with anyone else?
- Q6: How long will you follow me for?
- Q7: Who do I contact if I no longer want to be followed and do not want to have my details stored?
- Q8: Why do I have a patient diary?
Q1: What is the BADBIR study hoping to find out?
A1: BADBIR aims to assess the long-term safety of a group of psoriasis treatments referred to as 'biologics'. Although these treatments are fully licensed and prescribed by the NHS there is still a need to monitor their prospective impact as clinical trials are relatively quite short. BADBIR will monitor one group of patients receiving 'biologics' and a second group who are receiving conventional systemic treatments for psoriasis. The rates of illness and adverse events in the 2 groups will be monitored to see if there are any differences and if there is anything to be learnt.
Q2: Why have I been asked to join BADBIR?
A2: An invitation to join BADBIR means that you meet our inclusion criteria for one of the 2 patient groups we register for.
Q3: How will my participation help?
A3: By participating you will help us build up the amount of data we have for analysis. With more data, we will be able to reach better-informed conclusions on the long-term safety of the biologic treatments. By consenting to join BADBIR, you are making a valuable contribution to this research.
Q4: How many participants are to be recruited?
A4: BADBIR aims to recruit 20,000 participants. This is 4000 registrations on each of the 4 biologic treatments and an additional 4000 participants from the conventional cohort.
Q5: Will my identifiable details be shared with anyone else?
A5: Your identifiable information will strictly not be shared with anyone else aside from the National Health Service Information Centre (NHS IC). The NHS IC is the UK's central source of health and social care information and we share information with them as part of their routine flagging process.
Q6: How long will you follow me for?
A6: Each participant will be followed via their dermatologists for at least 5 years.
Q7: Who do I contact if I no longer want to be followed and do not want to have my details stored?
A7: You can either contact the BADBIR team directly on 0161 306 1896 / badbir@manchester.ac.uk or speak to your dermatology practitioner who will inform us of your withdrawal.
Q8: Why do I have a patient diary?
A: The diaries are used to collect clinical events which may occur between your dermatology clinic visits. It helps us to get a better overall picture of your care and current health.