For Patients
The Facial Pain Registry
Welcome!
The Facial Pain Association, in collaboration with NORD’s IAMRARE® Program, is excited to introduce the Facial Pain Registry — a groundbreaking initiative dedicated to advancing research, enhancing treatments, and advocating for improved care.
This registry provides a vital platform for people living with facial pain to share their experiences, collecting invaluable data that can help to drive medical discoveries and influence healthcare policies. By contributing your story, you play a crucial role in helping researchers, doctors, and policymakers gain deeper insights into the true impact of facial pain, ultimately paving the way for better outcomes.
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The Facial Pain Registry serves to:
- Support the design of clinical trials that explore new rare disease treatments.
- Describe the people who have facial pain and better understand the variability and stages of facial pain.
- Understand how facial pain changes over a person’s lifetime.
- Learn about clinical practice patterns and variations over the course of treatment.
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with facial pain; and
- Identify people with facial pain who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.
What types of data will be collected in the Facial Pain Registry?
The Facial Pain Registry collects data including but not limited to the following topics:
- Socio-demographics
- Symptoms
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The Facial Pain Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.