Refining Outcome Measures for trials in Alopecia areata (ROMA)
Alopecia areata, also known is a condition which causes non-scarring hair loss. It usually causes small circular bald patches on the scalp, but can affect the entire body.
The Refining Outcome Measures for trials in Alopecia areata (ROMA) project will determine what is meaningful to people with alopecia areata and clinicians to measure in clinical trials of treatments for alopecia areata.
If you are a healthcare professional involved in managing alopecia areata, please take a few minutes to complete our survey – your opinion is important.
You will be asked to choose from of a list of outcomes which you think are the most important to include in clinical trials. It takes only 5 minutes to complete. Thank you!
We are currently preparing the survey for people with alopecia areata.
We will also be conducting focus groups for people with alopecia areata. If you are interested in being involved and sharing your thoughts on what is important, please email Dr Abby Macbeth [firstname.lastname@example.org].
Why are we doing this project?
A priority setting partnership involving people with alopecia areata and clinicians identified the most important questions that need to be answered by research. Before we can carry out clinical trials to answer these questions, it is important that we establish what patients and clinicians think are the most appropriate outcomes to measure.
What will the research involve?
In this project we will:
- Review published trials of treatments for alopecia areata to see what has been measured previously.
- Analyse the free text responses in the priority setting partnership to identify any further outcomes.
- Ask people with alopecia areata attending the “All About Alopecia” event held in Manchester, June 2018 for their opinion on our long list of outcomes to establish whether the terms used were understandable, if there was overlap and whether there were any further important outcomes that were missing.
- Conduct focus groups and a survey of people with alopecia areata to find out i) what is important about having alopecia areata and ii) what should be measured in clinical trials to show whether a treatment has resulted in a meaningful improvement.
- Conduct a survey of clinicians to find out what they think is important to measure in clinical trials.
What will happen with the results?
We will use the information gathered to i) guide researchers in the choice of outcomes in clinical trials to answer the questions identified as important in the priority setting partnership and ii) to assess whether existing tools are suitable or whether additional patient or clinician reported tools are required.
Who is funding the project?