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Study summary
We are We are conducting a study for participants with genetically diagnosed alpha-1 antitrypsin deficiency (Alpha 1) who are interested in participating in future gene editing clinical trials. In this study, we are recruiting participants with Alpha 1 (with a known or suspected PiZZ mutation) aged 18 to 70. We will give you a tour of the clinical trials unit and conduct a number of clinical assessments to establish your current health status. This study is to help participants with Alpha 1 decide if they want to participate in future gene editing clinical trials.
If you are interested in participating in this patient engagement study:-
- You will need to attend an in-person visit, we will give you a tour of the clinical trial unit and perform tests to check your general health to obtain a clinical baseline.
- The tests can be spread over multiple days (if required).
- You will have a follow-up call with a doctor a week after the in-person visit.
- This means the whole process takes approximately 1 week.
- In total, you will come to the research unit at least once.
- During your in-person visit, we will conduct number of assessments. We will take blood, check your heart and carry out a physical examination to check your health. If available, we also will provide you with a hard copy of a patient information sheet for an upcoming gene editing clinical trial to take home.
Who can take part?
We will check your suitability for the clinical trial using the following criteria:-
- You are aged between 18 to 70 years (inclusive).
- You must have been diagnosed with alpha-1 antitrypsin deficiency (Alpha 1) (with a known or suspected PiZZ mutation).
- You must be able and willing to provide informed consent.
- You must be willing and able to comply with study assessments.
A full list of do’s and don’ts will be given to you by a member of our recruitment team if you are interested and want to find out more.
Study payment
In recognition of the time and effort involved in taking part in the study, you will receive £150 on completion of the study, provided you comply fully with all the study requirements.
Study dates
Following the completion of your registration form, a member of our recruitment team will contact you via phone and email to inform of the available dates.
Approval
The contents of this email have been approved by an ethics committee. Any response to this advertisement will be recorded. Your response will not place you under any obligation to participate in this trial.
You may be required to remain resident in the unit until resolution of any safety issues, after which you will be discharged from the unit.
Ref: C23017_MAR_2024 (email_website_advert text)
