Living with Von Willebrand disease?
Are you living with Von Willebrand Disease?
Your daily experience matters. Help us understand VWD better, and help researchers develop potential treatments to prevent bleeding.
What we want to learn from you:
- Your daily reality - how does VWD affect your work, relationships and daily activities?
- Your bleeding patterns - when bleeds occur, how severe they are and what triggers them?
- Your treatment use - what treatments do you use for your bleeds?
What is the study?
"Velora Discover" is a diary study where we invite you to share your real experience of VWD. It is run by Richmond Pharmacology on behalf of Hemab Therapeutics. (Trials4Us is the part of Richmond that runs our recruitment.) The information we gather will help researchers develop potential treatments to prevent bleeding in people with VWD - fewer bleeds, less disruption, better quality of life.
What to expect
If you are eligible, we’ll arrange an appointment where we carry out a short physical examination. We’ll give you an electronic diary and show you how to use it to record your bleeds and other symptoms daily. We’ll also inform you about some questionnaires to complete on specific days. Over the next 4-6 months, we’ll keep in touch with telephone calls and may invite you to visit our research clinic.
Where does the study take place?
After an initial visit to Richmond Pharmacology’s clinic near London Bridge, you will be recording entries in an electronic diary from your own home, in your own time, with only a couple more visits to the clinic required. We are happy to arrange and pay for your transportation to and from our London clinic.
Duration of Stay
Payment
Receive £968 in recognition of your time
Location
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: C23024_Jul_2024 (email_website_advert text)
Speak to a member of our Volunteer Recruitment Team
Comments from volunteers
Thanks very much to the Volunteer Recruitment Team. I am so excited to be part of this trial. I can’t thank you and your colleagues enough for all your help, professionalism, and kindness.
Steve K
Unbelievable service! They looked after me so well, and I would recommend them to anyone interested in participating in a clinical trial. I want to thank all the staff at trials4us for their continued efforts and for looking after me so well.
Chas
Very impressive. Thank you for taking care of me and for the valuable service you offer.
Joann
Very professional environment in the heart of London to conduct studies that help discover the medicines of the future.
James
Recruiting people with type 2 diabetes
Study Summary
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.
Who can take part?
- 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.
Study payment
Study dates
Approval
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)