Remote research study · Hidradenitis suppurativa

How HS treatments actually work, week after week.

HS-REAL follows people living with hidradenitis suppurativa over the long run — what they try, what gets in the way, and how symptoms really change. Everything happens on your phone, in the free Papaya for HS app.

The rhythm

One intake, then a few minutes a week.

HS is a long-running condition, so the study is built the same way — short, repeated check-ins that add up to a picture no single clinic visit can capture.

Intake — once, at the start
Weekly check-in
Monthly quality-of-life survey

Once

Intake & baseline Your history, current treatment, and HiSQOL baseline.

15–20 min

Every week

Treatment check-in What you're taking, how it's going, how you feel.

5–10 min

Every month

Quality-of-life survey The HiSQOL again, to track change over time.

10–15 min

Overall

For as long as you want Taking part is voluntary — you can stop at any time, for any reason.

Your call

Getting started

Three steps, all from your phone.

Download Papaya for HS

Free on iOS and Android. Setup takes a couple of minutes.

Read and sign the consent

You'll review the full informed-consent document in the app before anything else — it explains your rights, what the study involves, and how your information is used.

Start checking in

Complete your intake, then keep the weekly rhythm going for as long as you'd like to take part.

What HS-REAL stands for

The Hidradenitis Suppurativa Registry of Experiences And Long-term outcomes — named for what it actually collects:

Real-world patients

Real experiences

Real treatment patterns

Real outcomes

What we're learning

Questions clinical trials rarely answer.

Trials test one therapy under tightly controlled conditions. A registry watches what happens in ordinary life — across four areas.

Treatment effectiveness

Real-world results across every HS therapy, comparing how different treatment sequences perform.

Barriers to care

What makes treatment hard to access or hard to stick with, across diverse patient populations.

Disease trajectories

High-resolution pictures of how HS changes over time, built from weekly symptom tracking.

Patient outcomes

Outcomes reported by patients themselves, in geographically diverse communities.

Taking part

Who can join, and what you get out of it.

You can join if you

Are 18 or older
Live in the United States
Have access to a smartphone
Have a confirmed HS diagnosis (any severity)

What you get

A direct hand in moving HS research forward
Participation from home — no travel, no clinic visits
Freedom to stay involved as long as you want
Up to $10 a month for study-related tasks

Ready to take part?

Enroll from your phone.

Consent, intake, and every check-in live inside the Papaya for HS app.