Unlocking Real-World Head and Neck Symptom Data

The HEADS Research Gateway contains contemporary patient-reported data to advance clinical research, increase understanding of the diversity and significance of migraine variants, and improve treatment planning.

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HEADS Cohort Metrics

HEADS is a dynamic and growing U.S. patient registry that captures the lived experience of migraine and other chronic head and neck conditions in real time. Register to explore deeper cohort insights through interactive, real-time data visualizations.

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636

Total Participants

1,169

Completed Surveys

4,507

Total Data Points

What's in the Dataset?

The HEADS Registry captures structured, patient-reported data across key domains of disease impact, health history, and quality of life. The registry surveys were rigorously designed with input from clinical experts in neurology and otolaryngology. Data is collected longitudinally and includes validated measures to support studies examining chronic head and neck conditions.

The following are examples of variables collected and are not all-inclusive:

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Demographics

Age, sex assigned at birth, gender identity, race, and ethnicity. These variables support population stratification, subgroup analyses, and research examining demographic factors associated with symptom burden and treatment response.

Past Medical History

Patient-reported history of comorbid conditions, allergy testing, respiratory testing, hormonal medication use, medication attitudes, and migraine diagnosis.

Headache History and Symptoms

Age at headache onset, frequency, duration, location, severity, associated symptoms, and identified triggers. The section incorporates ICHD-3 diagnostic criteria and validated measures, including ID Migraine for diagnostic screening and MigSCog to assess cognitive symptoms associated with migraine.

Facial Pain and/or Pressure Symptoms

Frequency, severity, and location of facial pain and/or pressure across the sinuses, forehead, eyes, nose, and upper teeth. Facilitates differentiation of overlapping conditions and evaluation of symptom correlations.

Dizziness and Balance Symptoms

Vertigo, imbalance, disorientation, and motion sensitivity. Enables investigation into vestibular migraine, balance disorders, and their relationship to other head and neck symptoms.

Ear-Related Symptoms

Tinnitus, difficulty hearing, ear pain, ear pressure, hearing changes, and history of hearing tests. Supports studies on auditory manifestations and comorbidities in migraine and related disorders.

Female Health-Related Questions

Menstrual history, hormonal factors, pregnancy, and menopause-related changes. Enables exploration of hormonal influences on symptom frequency and severity.

Quality of Life and Burden of Illness

Assesses functional impact, activity limitations, and emotional wellbeing using a validated tool (MIDAS - Migraine Disability Assessment Scale). Supports health outcomes research and quantifies the real-world burden of migraine and related conditions.

COVID-19

Infection history, symptom overlap, and post-infection effects. Allows researchers to examine COVID-19's influence on headache, dizziness, and other chronic symptoms.

Medication and Treatment History

Prescription and over-the-counter medications, supplements, treatments, and other interventions, along with questions on effectiveness, side effects, and reasons for discontinuation. Enables evaluation of treatment patterns, tolerability, and real-world outcomes.

Using the HEADS Research Portal

The HEADS Research Gateway is designed for academic researchers, healthcare professionals, and industry partners to explore patient-reported data and collaborate on advancing research. Registered users can browse available data fields, request data, and connect with our team for research support.

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Search & Explore the Dataset

Access a rich library of patient-reported outcome data.

Request Data Access

Submit a data use request for aggregate or row-level data and outline your research objectives.

Design Future Studies

Propose future surveys or studies in collaboration with the HEADS team.

Plan for Recruitment

Identify eligible participant populations and request support to reach and engage patients.

How the HEADS Registry Works

HEADS is a participant-centered registry designed with scientific rigor, ethical oversight and transparent governance.

Ethics & Oversight

HEADS operates under IRB-approved protocols. All participants provide informed consent, and data access is reviewed by a steering committee.

Data Privacy & Security

Our platform is HIPAA-compliant. Direct identifiers are never shared with external researchers.

Patient-Centered Design

Surveys are co-developed with patients, community advisors, and clinicians to ensure accessibility, clarity, and relevance.

Research-Ready Structure

Data are collected using validated measures, standard question formats, and consistent data structures for interoperability.

Data Access Process

Create a HEADS Researcher Portal account to explore and request data. Requests undergo rolling review, and approved data are provided through a secure, controlled-access process.

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Frequently Asked Questions

Researchers affiliated with an academic institution, company, or other organization working on FSHD to advance disease understanding, clinical care, therapeutic development, or patient access are eligible to register. This can include decision makers in regulatory agencies or payor systems. FSHD patients enrolled in BetterLife FSHD and their parents or delegates with BetterLife accounts can also register.

Researchers at academic institutions can register an account for free, as can BetterLife FSHD participants. Other users may require payment, depending on your affiliation. If your account requires payment, our team will reach out to you during the account review process.

Current data visualizations include demographics, clinical and genetic diagnoses, medications, comorbidities, mobility, upper body function, and assistive devices. Visualizations can be customized with filters, which narrow your view to specific sub-populations of interest.

Researchers affiliated with an academic institution, company, or other organization can request access to aggregate and row-level data. To make a request, log into the Research Gateway and click “Start a Request”. All requests are reviewed by the Steering Committee.

Data access fees may apply and vary based on factors such as project complexity, funding sources, and organizational type. We aim to keep costs low for academic researchers, especially for investigator-initiated studies. For-profit and industry users should generally expect a fee. Our team will discuss any applicable costs during the data request review process. You’re also welcome to contact us in advance with questions.

Participants complete baseline surveys after enrollment, with follow-up surveys administered annually and as often as quarterly, depending on the survey. Data from the BetterLife FSHD registry is updated once a day to the Research Gateway.

Contact Us

Have questions about the Test Research Gateway? Our team is here to help. We aim to respond to all inquiries within 2 business days. Partner with us on new research initiatives, such as deploying a survey through the HEADS Registry or collaborating on a study.

How can we assist you today?

Choose the inquiry type that best represents your questions.