Your Experience Has The Power To Advance Research
The Association of Migraine Disorders has established the Headache, Ear, Auditory, Dizziness, Sinus (HEADS) Registry, a comprehensive registry that aims to gather critical data and insights from people about their experience with various head and neck symptoms, as well as their treatment journeys.
The HEADS Registry captures information about people (with or without migraine) who have sinus, vestibular, and auditory symptoms. Through an online survey, participants are asked about their symptoms, current and previous medications as well as information about their quality of life. The information will be used to improve the care and treatment of people living with these symptoms.
It is the strength of collecting information from many participants and their families that has the potential to provide researchers with knowledge that can improve the health of you, your family and others. The HEADS Registry will serve as a crucial resource for researchers and clinicians, offering a wealth of information on patient demographics, treatment approaches, and outcomes.
Your participation in this registry can pave the way for more effective therapies, enhanced and personalized patient care, and improved quality of life. Through this process, we will be learning together. Along the way, we will be sharing our findings with you.
No one else has your unique experience and that makes it valuable. Share it today.
GOALS & OUTCOMES
- Improve how healthcare professionals treat and understand head, sinus, vestibular and auditory symptoms
- Reduce delays in diagnosis and use of inappropriate tests, medicines and surgery
- Find the most effective treatments for sinus, vestibular, and auditory symptoms and disorders
Adults living in the United States experiencing any of the following intermittent symptoms are eligible to participate in the HEADS Registry:
- Sinus pain/pressure
- Facial pain/pressure
- Ear pain/pressure
- Nasal blockage
- Sudden hearing loss
- Visual disturbance
- Trouble understanding speech
- Sensitivity to sound
- Balance difficulties
What Is A Registry?
A registry is a collection of information about a group of people who share a condition or experience, and represents an important way for people to share their experience and perspective about their disease with the medical community to improve care, treatment and research.
Why Should You Participate?
Your experience matters! Your individual, personal experiences with headache, auditory, sinus, and vestibular symptoms/disorders can foster meaningful treatment developments and improved care for migraine and various other health conditions in the U.S.
How Does It Work?
Information is collected directly from you, the patient, via a secure online questionnaire. You will be asked to answer questions about your health history and patient experience through a secure online portal.
The HEADS Registry will ask you to update your experiences annually or biannually over the years. Along the way, we will be sharing our findings with you.
How Does the Registry Protect Your Information?
Access to your information is strictly controlled through an approval process to protect patient privacy.
Your information will be given a coded number. Scientists and other stakeholders studying relevant disorders may approach the registry to ask for access to your responses to the questionnaire. If granted, they will be able to obtain this information for their studies, but they will not be able to access your identifying information.
Many security measures are in place to ensure your information is only used in ways that you have agreed to. Identifying information can never be released without consent.