A Real World Study to Globally Assess Disease Burden in Adolescent and Adult Participants With Alopecia Areata, Vitiligo, or Hidradenitis Suppurativa
This study is gathering information from teenagers and adults around the world who have moderate or severe alopecia areata, vitiligo, or hidradenitis suppurativa. Researchers want to understand the real-life impact of these conditions. They aim to learn about the challenges and difficulties people face because of their skin condition. This information will help doctors and researchers better understand the everyday experiences of those living with these conditions, which could lead to improved care and support in the future.
At a glance
What is this study about?
This study is called "A Real World Study to Globally Assess Disease Burden." In simple terms, this means researchers are trying to understand the everyday challenges and difficulties faced by people living with certain skin conditions, not just in a lab or clinic, but in their normal lives around the world.
The conditions they are focusing on are alopecia areata (hair loss), vitiligo (patches of skin losing colour), and hidradenitis suppurativa (a long-term skin condition causing painful lumps and abscesses). The study is for teenagers and adults who have been diagnosed with either moderate or severe alopecia areata, non-segmental vitiligo, or moderate to severe hidradenitis suppurativa.
The main goal is to collect information from a large number of people globally. By gathering these real-world experiences, the researchers hope to get a clearer picture of how these conditions affect people's lives day-to-day. This understanding is important because it can help identify areas where support or treatments could be improved, ultimately leading to better quality of life for those affected.
Key takeaways
- This study collects real-life experiences of specific skin conditions.
- It's for teenagers and adults with alopecia areata, vitiligo, or hidradenitis suppurativa.
- No new medications are involved; you'll answer questionnaires.
- Your responses help researchers understand how these conditions affect daily life.
- Your participation could contribute to better future care and support.
- You can stop participating at any time.
Who may be eligible?
To join this study, you would need to be a teenager (12 years old or older) or an adult. You must have a confirmed diagnosis from a doctor for one of the specific conditions: alopecia areata (moderate or severe), vitiligo (non-segmental type), or hidradenitis suppurativa (moderate or severe).
You should also be able to understand questionnaires; if you are a teenager, help from a parent or guardian is fine. It's important that you are willing and able to follow the study's instructions and complete the necessary forms.
You would not be able to join if you are currently taking part in another medical study that involves trying out a new treatment or medication. However, if you are part of another study that just collects information (like a registry), you might still be able to participate in this one.
- Are you 12 years old or older?
- Has a doctor told you that you have alopecia areata (moderate/severe), vitiligo (non-segmental), or hidradenitis suppurativa (moderate/severe)?
- Are you able to understand and answer questionnaires (with help if you're a teenager)?
- Are you currently NOT taking part in another study that is testing a new medication?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
This study is focused on gathering information about your experiences, not testing new medications. If you take part, you would be asked to complete questionnaires about your health and how your condition affects your daily life. These questionnaires are designed to help researchers understand the challenges you face. There are no study medications involved, and because it's about real-world experiences, there are no specific follow-up appointments from the study itself. The total duration for your participation will depend on how long it takes to complete the questionnaires, which might be a one-time process or spread over a short period. The study itself is collecting data globally, but your individual involvement will be straightforward.
Potential risks and benefits
Locations (116)
- Hospital Britanico de Buenos Aires /ID# 278940Ciudad Autonoma de Buenos Aire, Argentina· Recruiting
- Buenos Aires Skin /ID# 277637Buenos Aires, Argentina· Recruiting
- Centro de Investigacion y Prevencion Cardiovascular (CIPREC) /ID# 277634Buenos Aires, Argentina· Recruiting
- Hospital Italiano de Buenos Aires /ID# 277636Buenos Aires, Argentina· Recruiting
- Instituto de Neumonología y Dermatología /ID# 277635Buenos Aires, Argentina· Recruiting
- Dermatology Research Institute - Blackfoot Trail /ID# 276548Calgary, Canada· Recruiting
- Rejuvenation Dermatology - Edmonton Downtown /ID# 276593Edmonton, Canada· Recruiting
- Alberta Dermatology Consultants /ID# 277187Edmonton, Canada· Recruiting
- Brunswick Dermatology Center /ID# 276546Fredericton, Canada· Recruiting
- Simcoderm Medical And Surgical Dermatology Centre /ID# 276838Barrie, Canada· Recruiting
- DermEffects /ID# 276594London, Canada· Recruiting
- Lynderm Research Inc /ID# 276595Markham, Canada· Recruiting
+104 more sites — see the official record for the full list.
Common questions
What kind of questions will I be asked?
You'll be asked about how your condition affects your daily life, your feelings, and any challenges you face because of it.
Do I need to take any new medicines for this study?
No, this study does not involve taking any new medicines or treatments. It's purely about collecting information on your experiences.
How long will I be involved in the study?
Your involvement mainly consists of completing questionnaires. This might be a one-off set of questions or spread over a short period.
Can my doctor still treat me as usual if I join?
Yes, joining this study will not affect your regular medical care or any treatments your doctor has prescribed for you.
Is my personal information kept private?
Yes, all your personal information will be kept confidential and handled according to strict privacy rules.
How to find out more
Beth Rycroft
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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