What You Should Know About Patient Registries
If you live with migraine disease or headache disease, your experiences matter — not just to you, but to researchers and doctors working to improve care and discover better treatments. Patient registries collect information directly from people like you to build a clearer picture of how these diseases affect real lives.
By joining a registry, you can help advance science, influence new therapies, and ensure that the patient voice is heard. Participation is voluntary, confidential and can often be done from home. On this page, you’ll find a list of patient registries focused on migraine and headache, along with details to help you decide which ones might be right for you.
What are patient registries?
A patient registry is a secure database that collects health information from people who share a specific condition — like migraine or headache disease. Registries track things such as symptoms, treatments, quality of life and long-term health outcomes.
The goal is to help researchers and healthcare providers better understand the condition, identify patterns and improve care. Unlike a clinical trial, which tests a specific treatment, a registry simply gathers information over time. Your participation can help build the evidence needed for new treatments, better guidelines and stronger advocacy for the migraine and headache community.
What is the life cycle of a registry?
Planning and Setup: Researchers define the purpose of the registry, decide what information to collect, and create secure systems to protect your privacy.
Recruitment and Enrollment: People with the condition are invited to join, usually by filling out consent forms and sharing their first set of health information.
Ongoing Data Collection: Participants are asked to update their information over time — this could be every few months, once a year or after certain health changes.
Analysis and Reporting: Researchers review the collected data to find patterns, track trends, and publish findings that can influence treatment, policy and future research.
Because registries are meant to capture changes over time, they can stay active for many years. The more people who join and stay involved, the more valuable the information becomes.
Why join a patient registry?
This is a powerful way to turn your personal experience into something that can help the entire community. When you share information about your symptoms, treatments and quality of life, you help researchers and healthcare providers see the bigger picture of how these diseases impact real people.
Your participation can:
- Advance research by identifying patterns, triggers, and effective treatments.
- Influence new therapies by showing what works — and what doesn’t — in real life.
- Strengthen advocacy with data that can be used to improve healthcare policies and access to care.
- Give you a voice in shaping the future of migraine and headache disease treatment.
By joining a registry, you’re helping move science forward and bringing hope for better care, better treatments and better lives.
What should I expect in a patient registry?
When you join a patient registry, you’ll be asked to share information about your health, symptoms, treatments and daily life with migraine or other headache disorders. Most registries start with a one-time enrollment survey, followed by shorter updates over time. These updates might happen every few months, once a year, or whenever something changes in your health.
Here’s what’s typical:
- Consent and privacy protections: You’ll review and sign consent forms explaining how your information will be used and kept secure.
- Initial questionnaire: This gathers your medical history, current symptoms, treatments and quality-of-life details.
- Follow-up surveys: These help track changes, treatment responses and long-term patterns.
- Possible optional activities: Some registries offer opportunities to join related studies, share biological samples or receive study updates.
Most registries can be completed online at your own pace, and your participation is voluntary — you can stop at any time. The goal is to make it easy for you to share your story while protecting your time, comfort and privacy.
Migraine and Headache Registries
HEADS Registry
This patient registry captures information about people (with or without migraine) who have sinus, vestibular and auditory symptoms.
Cluster Registry
The goal is to build a database of people for possible involvement in future research and clinical studies of cluster headaches.
Facial Pain Registry
Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate on facial pain research.
MONITOR Registry
Are you pregnant and diagnosed with migraine? Have you taken Nurtec® ODT (rimegepant) or other migraine medications during your pregnancy?
GENESIS Registry
This registry has been created to help doctors better understand if Aimovig® (erenumab-aooe) has any effect on a woman’s pregnancy, delivery, or baby. However, you do not have to have taken Aimovig to participate.
Dizziness, Vertigo & Imbalance Registry
This registry will collect information from participants (or their authorized representatives) who are affected by dizziness, vertigo, and imbalance caused by a vestibular condition.