Frequently Asked Questions

Researchers affiliated with academic institutions, industry, or other organizations involved in improving disease knowledge, clinical practice, or therapeutic development may register for access. This includes individuals working within regulatory bodies or payer organizations.

Select the “Register” button on the homepage and complete the form with your institutional details and contact information, using your organization-linked email address. Once submitted, your registration will be reviewed by our team. Accounts are evaluated on a rolling basis, and approvals are issued as promptly as possible.

The portal currently provides visualizations across domains such as demographics, medications, comorbidities, and symptoms. Visualizations can be customized using filters to focus on specific subgroups of interest.

Yes. Registered users can search and view all available variables directly through the dashboard.

Researchers affiliated with eligible institutions can request access to aggregate and row-level data. To initiate a request, log into the portal and select “Start a Request.”

Data access fees may apply and depend on factors such as project scope, funding, and organizational type. We aim to minimize costs for academic investigators, especially those leading independent research. Industry and for-profit groups should anticipate associated fees. Any applicable costs will be discussed during the request review, and we welcome inquiries in advance.

Yes. Publications and presentations are permitted as long as the HEADS Registry is appropriately acknowledged and all requirements in the data use agreement are followed.

Participants complete an initial survey at enrolment and follow-up surveys are administered annually. Registry data is synced to the Research Portal once daily.

All information is self-reported by individuals experiencing Headache, Ear, Auditory, Dizziness, or Sinus-related symptoms. Survey content is developed with input from both patients and clinical experts to ensure clarity and relevance.

We welcome collaboration proposals, including development of new survey modules or study add-ons. Please contact us to discuss your ideas.

Yes. Registered users may request assistance with targeted outreach to potentially eligible participants. Recruitment requests can be submitted through the portal by selecting “Start a Request.”

We provide additional services (e.g., protocol design, data analysis, interpretation of results, manuscript-ready tables/graphs, scientific writing support) upon request. Please note that availability depends on project scope and resource capacity.

You may reach us through the Contact Us form or email us directly at [email protected].