Parkinson's Disease: Why Research Pays for Patient 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.

Parkinson's disease changes slowly and differently in every person. What helps one person's tremor or stiffness does little for another's; medicines that work for years can begin to wear off between doses. The people who know that course best are the ones living it and the people who care for them, and research on Parkinson's has shown, with real money, how much it values data about them.

How many people live with it

According to the WHO, "global estimates in 2019 showed over 8.5 million individuals with PD", and "the prevalence of PD has doubled in the past 25 years". In the United States alone, the Parkinson's Foundation estimates that nearly 90,000 people are diagnosed with PD each year. The WHO is plain about the state of treatment: "there is no cure, but therapies and medicines can reduce symptoms."

Research already pays for Parkinson's data

Parkinson's research is one place where drug companies have paid for consumer health data at scale. In 2015, Genentech reportedly paid $10 million upfront and agreed to $50 million in milestones to access 23andMe's database for target discovery of new drugs for Parkinson's disease. In other words, a drug company agreed to pay up to $60 million for access to data about a disease that no medicine can yet stop.

Deals like this pay the company that holds the data. CureCircle is built so that the people the data describes are paid too.

The records worth keeping

NICE's guideline on Parkinson's disease describes the care that leaves most records:

• Specialist reviews at regular intervals of 6 to 12 months to review the diagnosis, with letters after each.
• Medication history, starting for many with levodopa in the early stages when motor symptoms affect quality of life, and every change since.
• Imaging in some cases: a DaTscan (SPECT) when essential tremor cannot be told apart from parkinsonism, or a structural MRI when other parkinsonian syndromes are suspected.

Beside these, a diary of symptoms through the day, when medicines kick in and wear off, falls, sleep and freezing, is the kind of record that clinics rarely see and research needs. Many people also wear a watch that records movement and sleep.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete Parkinson's story with a year of the records the guideline lists comes to about $110 per licence on the benchmark today. With 60 diary entries and 90 days of wearable data, it comes to about $404 per licence. Every line and its source is on the Parkinson's disease 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.

How to share it, for yourself or someone you care for

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. If you care for someone with Parkinson's, you can tell the story for them, as their representative or with their permission; the questions are then asked about them. You can add letters, scan reports and pages of a diary 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.