Macular Degeneration: Your Eye Scans and Treatment as 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.

Age-related macular degeneration is followed through pictures: scans of the back of the eye, taken again and again, that show the layers of the retina in detail. For people with wet AMD, those scans decide when the next injection is due. A series of them, with the treatment history and the person's own account of what they could still read, drive or recognise, is exactly the kind of record research on eye disease, including AI that reads eye scans, learns from.

How many people live with it

A meta-analysis in The Lancet Global Health projected that 196 million people would have age-related macular degeneration in 2020, increasing to 288 million in 2040.

The records worth keeping

NICE's guideline on age-related macular degeneration describes the scans and treatments that leave records:

• An OCT scan (optical coherence tomography) for people with suspected late AMD (wet active), and ongoing monitoring with OCT for both eyes once treatment starts.
• Fluorescein angiography in some cases, to confirm the diagnosis if OCT does not exclude neovascular disease.
• Anti-VEGF injections: NICE recommends intravitreal anti-VEGF treatment for late AMD (wet active). The record of each injection, its date and the eye, shows the treatment over time.

Copies of your scan reports, and the scans themselves if your eye clinic can give them, are the heart of an AMD record. If you do not have them, ask your eye clinic 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 AMD story with the records the guideline lists comes to about $131 per licence on the benchmark today, and about $253 per licence with four eye scans added as image files. Every line and its source is on the macular degeneration 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 macular degeneration and their caregivers are also paid for their time directly: a published listing offered geographic atrophy patients and caregivers $120 for a 60-minute phone interview.

For carers

Many people with AMD are helped by a partner or an adult child who drives them to appointments and keeps track of injections. You can share the story of someone you care for, with their permission. The questions are then asked about them, and the record notes that a carer told it.

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 tried. You can add scan reports, clinic letters and the scans themselves as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

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