RecruitingInterventional

Can a digital self-help tool, created together with autistic people, support them in managing headaches?

Headaches can be painful and disruptive, and research suggests autistic people experience them more often than others. While smartphone apps exist to help people manage headaches, they are rarely designed with autistic users in mind. This study, run by Ulster University, aims to change that. Researchers are working directly with autistic people to adapt an existing headache self-management app so that it works better for them. The project has two stages. First, volunteers can share their ideas in an interview to help shape the app. Second, participants test the app for 12 weeks on their own phone or tablet. They track their symptoms and explore practical tips on topics like sleep, rest, and managing pain attacks. The goal is to find out whether the app is practical and comfortable to use, helping researchers plan a larger study in the future.

At a glance

Status

Recruiting

Sponsor

University of Ulster

Enrolment target

Start

01 Sep 2026

Estimated completion

31 Mar 2027

Self reported persistent or chronic headache in autistic individuals

What is this study about?

Headaches can affect every part of everyday life, from school and work to socialising and rest. Research shows that autistic people may experience frequent or long-lasting headaches more often than non-autistic people. However, autistic individuals are rarely included in headache research. Because of this, many standard tools and advice may not be well-suited to their sensory and lifestyle needs.

Smartphone apps can help people track headache triggers and learn coping strategies, such as relaxation techniques, pacing daily activities, and improving sleep habits. Most existing apps were created for the general population. Some autistic people may find these tools overwhelming, rigid, or difficult to use. This project works directly with autistic people to adapt an app so that it is genuinely accessible and useful for them.

Researchers at Ulster University are carrying out this early study (called a feasibility study) to see how well the adapted app works in practice. By gathering feedback from real users, the team hopes to improve the tool and decide whether to test it in a larger clinical trial later on. Taking part is a way to help shape future support for the wider autistic community.

Key takeaways

Tests a headache self-management app adapted specifically with and for autistic people.
Open to people aged 16 and older with regular headaches (at least once a month).
Self-identification as autistic is fully accepted; no formal diagnosis is required.
Involves an interview, a 12-week app test, or both, with no new medications involved.
The app provides self-help strategies and does not replace care from your GP.

Who may be eligible?

This study is open to people aged 16 and over who have frequent or long-lasting headaches. To take part, you should have headaches at least once a month for three months or more. You also need regular access to a smartphone or tablet to test the app.

You can take part if you have a formal diagnosis of autism or if you self-identify as autistic. You do not need to show proof of a medical diagnosis to join.

This study is not suitable for people with brand-new headaches that have not been checked by a doctor, or headaches caused by an underlying illness. You also cannot join if you are already taking part in another headache trial, if you have photosensitive epilepsy that makes screen use unsafe, or if you are currently experiencing a severe mental health crisis.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I am aged 16 or over.
I have an autism diagnosis or identify as autistic.
I get headaches at least once a month, and have done for 3 months or more.
I have regular access to a smartphone or tablet.
I do not have photosensitive epilepsy that makes screen use unsafe.
My headaches are not brand-new and have been checked by a doctor if necessary.

Answer every question to see your result.

What does participation involve?

Taking part can involve one or both parts of the study, and you can choose how much you do. In Phase 1, you take part in a single interview lasting between 45 and 90 minutes. This can happen online from home or in person at Ulster University. You will talk about your experiences with headaches and what features you would like to see in an app.

In Phase 2, you test the app on your own smartphone or tablet for 12 weeks. For the first two weeks, you only use the app to track your headaches. For the remaining ten weeks, you can explore short lessons on pacing, sleep, relaxation, and dealing with headache attacks. You will fill out a short survey at the beginning and end of the 12 weeks, and you may be invited to a brief interview to share your thoughts. The study does not involve taking or changing any medications. Gift vouchers are provided as a thank-you for your time.

Potential risks and benefits

There is no guarantee that using the app will reduce your headaches, but your feedback will help create a better digital tool for other autistic people in the future. Focusing on your symptoms or tracking pain closely can sometimes feel tiring, stressful, or make you more aware of your headaches. You are free to take breaks, ask for paper tracking forms instead of using a screen, or stop taking part at any time without giving a reason. The app provides self-help ideas and does not replace medical care from your GP.

Locations (1)

Ulster University
Approximate
Belfast, Northern Ireland

Common questions

Do I need an official autism diagnosis to take part?

No. You are welcome to join whether you have a formal NHS diagnosis or you self-identify as autistic.

Will I need to take any new medications?

No. This study only tests a mobile app for self-help and symptom tracking. It does not involve any drugs or medical procedures.

Do I have to travel to Northern Ireland?

No. The interviews can be done online via video call, and the app testing is done completely at home on your own mobile device.

Do I have to do both parts of the study?

No. You can choose to take part in the interview stage, the 12-week app testing stage, or both.

What should I do if tracking my headaches makes me feel anxious?

You can take a break at any time, switch to paper tracking sheets, or withdraw from the study. The team can also direct you to support services if needed.

How to find out more

Joanne Marley

j.marley@ulster.ac.uk +44 07515680571 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.