Alopecia Areata: Your Experience of Hair Loss and Treatment Is Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Alopecia areata is unpredictable: patches that come and go, hair that regrows and falls out again, sometimes eyebrows, eyelashes or all of it. Treatments range from injections and creams to newer tablets, and what they do differs widely between people. How the condition behaved over the years, what each treatment did, and what it meant for daily life and confidence is what research on alopecia areata needs, and the person living with it, or the parent of a child with it, is the one who knows.

How many people it affects

A 2024 global analysis estimated the lifetime prevalence of alopecia areata at 0.10% in the general population worldwide: about one person in a thousand.

The records worth keeping

The German S3 guideline on alopecia areata describes the assessments that leave records:

• Dermoscopy of the affected areas, which ought to be performed to monitor the progress of AA.
• Severity scales for eyebrows, eyelashes and nails, including patient-reported scales.
• Blood tests where there is a reason, such as a blood count, thyroid values, an ANA titre and vitamin D.
• A skin biopsy in selected situations when the diagnosis is unclear.

Photos taken at regular intervals and your own notes on each episode show the pattern over time. If you want your clinic letters, ask your dermatology service for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete alopecia areata story with the records the guideline lists comes to about $97 per licence on the benchmark today. Every line and its source is on the alopecia areata page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

People with alopecia areata are also paid for their time directly: a published listing offered $150 for a 90-minute phone interview.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add clinic letters and blood results as PDFs or photos, and the AI reads them into your own medical file. Parents can share the story of a child with alopecia areata, as their parent or guardian. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.