Research Register

Patient information sheet

We are inviting you to be part of the respiratory research registry and to be given information regarding research studies that could be applicable to you or to be contacted for a Patient and Public Involvement (PPI) role. Before you decide whether to be part of this it is important for you to understand what it will involve for you. Please take time to read the following information carefully so as to decide whether or not you wish to be included. Please feel free to talk to others about this if you wish.

What is the purpose of this registry?

“The Respiratory Research Registry” is a registry that has been created to provide a source of research interested patients who can be contacted for suitable future studies within Respiratory Medicine or to be contacted to join Patient and Public Involvement (PPI activity.

You will be asked for your permission to allow us to hold some details about you and to contact you in the future about research studies that may be relevant to your condition and/or treatment. As with your inclusion on the Registry, your involvement in any future studies would be entirely voluntary.

Agreeing to be approached in the future does not obligate you in any way to participate in any of the studies to which you may be invited.

Why have I been invited?

You have been invited because you have a respiratory related condition as deemed by your doctor or healthcare practitioner and you are either having evaluation and/or treatment of your condition, or you have responded to a letter, flyer or poster or you have expressed an interest in this registry during your clinic or research visit.

Do I have to take part?

No, it is up to you to decide whether or not to take part. Consenting to your information being held on the registry and being contacted regarding future research/ PPI opportunities is entirely voluntary and you are free to withdraw from the registry at any stage. If you decide to withdraw, your information will be removed from the registry, and you will not be contacted regarding future studies. Any current or future healthcare that you receive will not be affected by deciding whether or not to registry yourself here.

What will happen if I take part?

If you agree to take part, you will need to sign a consent form to allow us to record the following information:

• Your name

• Hospital number

• Diagnoses (Asthma/COPD/interstitial lung disease etc if you have a definite diagnosis) or presenting problems (breathlessness / chest pain) if appropriate

• Email address

• Address

• Telephone number

• Trials you are participating in currently

• Trials you have been sent information about

The information you provide will be stored on the registry, and it will only be accessible to appropriate research staff in the Oxford Respiratory Trials Unit (ORTU) and the Nuffield Department of Medicine Academic Respiratory Unit (ARU) in order to assess your eligibility for future studies and contact you about them.

Clinical trials and future studies

If you consent to be placed on the registry, we will invite you to consider taking part in current and future research studies ongoing in ORTU or ARU that may be suitable for you. However, agreeing now to be on the registry does not commit you to participating in any future studies. If contacted about research studies, these will be explained to you and you will be given ample time to consider whether or not you wish to be included in them. Your participation will be entirely voluntary.

What are the advantages and disadvantages to taking part?

There are no disadvantages in consenting to being on the registry; your information will be guarded carefully, and there is no obligation to participate in future research studies or in PPI activity. Your standard NHS care will not be affected whether you decide to take part or not.

You may benefit from being part of this registry as you may be offered opportunities to take part in research studies. Yours and others involvement may help us to better enrol to research studies and improve future understanding and treatment of your condition. You are asked to share your information and will not receive a financial reward either now or in the future.

Your information will not be sold for profit to other researchers or commercial organisations.

What will happen to the information that I provide?

The information will be entered onto the registry which is only accessible to the research staff within the ORTU and the ARU, who have applied for access and been trained appropriately. 

Will my taking part be kept confidential?

Yes, all the information about your participation in this research registry will be kept confidential. All of your details will be stored on a password protected computer database and will only be accessible to those with authorised access. Responsible members of the University of Oxford or the local NHS hospital trust may be given access to data for monitoring or audit of the registry to ensure we are complying with regulations.

Who has reviewed this Registry?

Any use of patient data is looked at carefully by the local Trust Research and Development department, who grant local approval for this registry to be set-up at Oxford University Hospitals NHS Foundation Trust and Oxford Health NHS Trust.

Further Information and Complaints

If you require more information about this respiratory research registry, or if you wish to complain about any aspect of the way in which you have been approached to take part in this respiratory registry please contact the research team on 01865 225205 or email researchregistry@ndm.ox.ac.uk

If you wish to complain to a third party, you may contact the University of Oxford Research Governance, Ethics & Assurance Team (RGEA) office at RGEA.complaints@admin.ox.ac.uk