Empower Progress in Epilepsy Care
We are on a mission to shape the future of epilepsy patient care and research.
Share your unique epilepsy experience by completing a survey and securely volunteering your medical history. By participating, you’ll receive access to resources that can enhance your understanding of your epilepsy and further empower you in your journey.
This study is in collaboration with Epilepsy Study Consortium Inc (ESCI), who are dedicated to accelerating the development of new therapies in epilepsy to improve patient care.
“Each shared experience strengthens our understanding of epilepsy and can help us unlock advancements in epilepsy care. Together, we can empower progress.”
Jacqueline French, MD
President of ESCI & Principle Investigator for the EMPOWER study
Why Should I Join Empower?
Share Your Epilepsy Journey
Your medical records contain valuable information that can contribute to a better understanding of epilepsy and its impact on individuals.
Take Control of Your Health
Healthcare data can feel isolated across different doctors that you’ve seen. Participation provides you with unparalleled access to all your medical records in 1 convenient location. This makes it easier for you to share your information with your family and healthcare team, empowering you to take an active role in your health journey.
Access Resources
All patients will receive a seizure diary and eligible patients may speak with a nurse navigator to hear more about epilepsy and seizure types. Understanding your seizures can help you better understand your treatment options.
Learn From Others With Epilepsy
We believe in the power of shared experiences. By participating in our survey, you’ll learn from others who are living with epilepsy. Reported data will be aggregated, deidentified, and periodically shared with you via email, fostering a sense of community and understanding.
Hear From Us
Learn about future research opportunities in epilepsy. Praxis will notify you when new opportunities become available that may be a good fit for you based on your profile.
Who Can Join Empower?
Anyone who has a diagnosis of epilepsy by a healthcare professional
Anyone at least 18 years old and living in the United States
How Empower Works?
What We Ask of You
Finish Registration
Create a password and review the informed consent
Complete a survey
Share more about your individual experience with epilepsy.
Link your health data
- Use CLEAR’s secure identity verification system to connect and sync your health records.
- We have partnered with CLEAR to provide a compliant, secure, and streamlined way for EMPOWER participants to verify your identify. You will need a mobile phone and a photo ID to connect using this method.
- CLEAR will never use your data beyond EMPOWER.
OR
- Manually add your healthcare providers information using known login information
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What You Receive From Empower
Access your comprehensive medical history in 1 place
Your online profile will contain a digitized timeline of your medical history to share with your caregivers and/or your healthcare team.
Receive a seizure diary to track your seizures
Easily track your seizures to share with your caregivers and/or your healthcare team.
Eligible patients may speak with a nurse navigator
Eligible patients may be contacted by a trained epilepsy nurse navigator to receive additional information about epilepsy and seizure types—empowering you to have a more detailed conversation with your current healthcare provider.
Receive summarized de-identified data reports
As more patients sign up, we’ll share summarized de-identified reports with you so that you can learn more from others’ experiences. All information is completely anonymous.
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What We Will Do With the Empower Results
We will pair your anonymized data with others’ to better understand the collective needs of patients with epilepsy
Pairing anonymous medical data across unique individuals is an invaluable tool to detect patterns in disease and care. This can help us unlock advancements in epilepsy care.
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FAQs
About the Study
Why is this research study being conducted?
To support ongoing efforts to bring epilepsy treatments to individuals like you, by creating a database of health data which will be available for Praxis researchers to study a broad variety of scientific questions.
Does it matter what type of epilepsy I have?
Anyone who has a diagnosis of epilepsy by a healthcare provider as defined by the International League Against Epilepsy (ILAE) can participate.
How long will it take to enroll in the study?
It will take approximately 15 minutes to read the patient informed consent, complete the survey, and if you choose, to share your medical records.
Whom can I contact if I have more questions?
If you have any questions or concerns regarding participating in the Empower program, please email us at empowerepilepsystudy@praxismedicines.com.
Do I have to pay to participate?
No, there is no charge for taking part in this study. The consolidated medical records, electronic seizure diary, data reports, and potential nurse navigator conversations are provided for free.
Will I be paid to participate?
No, there is no compensation for taking part in this study.
How long will I have access to program resources?
The Empower program will run for a minimum of 2 years. At that time, we will evaluate the program and decide whether it will be continued.
Can I withdraw from the study after I have started?
Your participation in the study is entirely voluntary and you may withdraw at any time. To withdraw you must let the study team know by writing to the email address empowerepilepsystudy@praxismedicines.com.
Who is sponsoring the trial?
Praxis Precision Medicines is the sponsor in conjunction with Epilepsy Study Consortium Inc (ESCI).
Who oversees the trial?
In order to ensure that a research study is ethical, and that participants’ rights are protected, Institutional Review Boards review and approve study protocols that detail all aspects of how the study is conducted. In addition, study monitors, also known as clinical research associates, confirm that the study protocol procedures and research study requirements and regulations are being followed throughout the study.
Privacy and Permission
Is disclosing my health data voluntary?
Yes, disclosing your health data is completely voluntary.
Who will see my data?
Access to your data will be strictly limited to authorized personnel involved in the study. We comply with all relevant ethical guidelines and data protection regulations to ensure the security and confidentiality of your information. The results of this research may be published in research reports or scientific publications and presentations. In all such circumstances, Praxis will remove any information that identifies you or reasonably could be used to identify you. The informed consent form will provide more information about how your privacy will be maintained.
How will my data be used?
Your data will be used exclusively for research purposes.
What information about me will be collected?
If you decide to participate, the following personal health data may be collected:
- Your name, address, telephone number, date of birth, race/ethnicity, medical record numbers, and/or other identifying information
- Results of examinations, laboratory tests, and procedures, such as physical examinations, blood tests, medical imaging, or other medical procedures
- Information about your medical conditions and history, health conditions, treatments, and medical procedures, including related dates
- Sensitive data that may include information about your mental health, use of alcohol/drugs, sexual or infection data, including HIV status
Does my regular doctor have to give permission?
Your doctor does not have to give permission for you to participate.