Haemophilia: Why Your Bleed Log 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.

People with haemophilia, and the parents of children with it, are some of the most careful record keepers in medicine: every bleed, every infusion, every swollen joint. Treatment has changed fast, from factor infusions to longer-acting products and new medicines given under the skin, and research needs to know how those changes play out in daily life over years. A bleed log joined to the treatment history is exactly that evidence, and because haemophilia is rare, each one counts for more.

How many people live with it

The World Federation of Hemophilia's guidelines put the expected number of males with hemophilia worldwide at 1,125,000, the majority of whom are undiagnosed. Its annual global survey found that the global prevalence of hemophilia increased from 2.75 to 3.75 per 100,000 between 2014 and 2023 as more people were diagnosed.

The records worth keeping

The WFH guidelines describe the records that care keeps:

• A bleed log: the WFH recommends that the frequency of all bleeds is documented in real time by patients or caregivers and reviewed together at least annually.
• A yearly joint and health assessment, documenting the musculoskeletal and overall health of each patient at least annually.
• Inhibitor tests for newly diagnosed haemophilia A, at least every 6 to 12 months, and then annually.

Many treatment centres and apps keep the bleed log digitally; an export of it, with your factor levels and treatment history, is a rich record. If you do not have them, ask your haemophilia centre for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. Because haemophilia is rare, a complete story with the records the guidelines list comes to about $186 per licence on the benchmark today, and about $584 per licence with 60 bleed log entries added. Why rare disease data is worth more. Every line and its source is on the haemophilia 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 haemophilia and their caregivers are also paid for their time directly: a published listing offered $120 for a 60-minute phone interview.

For parents

Most children with haemophilia have a parent who has kept their records since diagnosis. You can share your child's story, as their parent or guardian; the questions are then asked about them, and the record notes that a carer told it.

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