Epilepsy Patient Advocacy and the RISE Clinical Trial

RISE: A Clinical Trial For Epilepsy

I recently had the opportunity to speak with Anne Neumann, RN, BSN, Rare Disease Marketing, Patient Advocacy and Engagement Lead at Biohaven, about her role and about RISE: A Clinical Trial For Epilepsy.

Background on Ms. Neumann

Anne brings over 25 years’ experience in healthcare, from nonprofit to clinical practice to various roles with the pharmaceutical industry. Anne received her Bachelor of Science in Nursing from Chamberlain University. She did her clinical practice at Western Connecticut Health where she practiced in several different specialties, including medical/surgical, oncology and neurology. Since then, Anne has worked as a nurse case manager for Alexion Pharmaceuticals, field nurse educator for Novartis Oncology, and oncology sales representative for Novartis, supporting several disease states. Anne became a product trainer for oncology at Novartis before joining Biohaven. Anne also continues to support her love of public health as chairmen of the board for the Housatonic Valley Health Department which she has supported for nine years, in several volunteer capacities, including growing the department during the Covid pandemic.

Living Well With Epilepsy:Could you share a little about your role at Biohaven?

Anne Neumann: I am the Global Patient Advocacy and Marketing Lead. I interact with patient groups across all of platforms. Prior to joining Biohaven I was a nurse product trainer at Novartis. I have a love of public health and patient advocacy.

A Strong Connection to Epilepsy

LWWE: Would you mind sharing your connection to the epilepsy community?

AN: Sure, my 17 yr. old daughter was diagnosed with epilepsy at age 14, after having a tonic conic seizure before her first day of high school. In retrospect she had been having classic JME jerks for over a year.

A Focus on Epilepsy Quality of Life

LWWE: As a parent of a child with epilepsy how does that inform your work?

AN: One of the most important parts of my job is connecting with patients and caregivers. I am a nurse by trade and that has always been easier for me. However, watching my daughter struggle through side effects and MULTIPLE medications, my drive for this program is more personal and very relatable to patients and caregivers.

LWWE: How does your background in nursing inform your work?
AN: Advocacy work is an extension of my nursing years. It is one of the main focuses of nursing. Trust is huge part of my job and nursing background has allowed me to build on that here at Biohaven.

RISE A Focal Refractory Epilepsy Study

LWWE: Tell us about the RISE Clinical Trial and what makes it unique

AN: BHV7000 is a new potassium channel activator that Biohaven is testing in focal epilepsy, generalized epilepsy, depression, and bipolar disorder.  The potassium channel helps regulate the excitability of a cell and activating it may inhibit seizures from starting and evolving.  Currently there are no potassium channel activators available in the market so this would be a unique mechanism.  The RISE trial is the name of the focal trials.

An Epilepsy Clinical Trial

LWWE: Who is eligible for RISE?

AN: People between 18 and 75 years old who have a diagnosis of focal seizures and are continuing to have seizures despite treatment may be eligible for the study.

LWWE: Why should someone participate in RISE?

AN: Anyone who has focal (complex partial) seizures and continues to have seizures despite treatment should at least consider a clinical trial.  Clinical trials are the best way to get the latest generation of medications. The hope is that newer medication have less side effect and can reduce seizures. While Biohaven is actively studying BHV7000, it is not available for doctors to prescribe.  Joining a trial is a way to try a medication earlier than waiting for it to be approved.

LWWE: What is the best way to learn more about RISE?

AN: The website below provides a lot of information about the study and there is a link to a questionnaire to see if you could be a candidate. You will be contacted by a representative who can provide more information and help find the closest participating site. We encourage everyone to speak with their personal physicians to see if they may be a good candidate for the study.  If their physician is not part of the study, he/she may also be able to refer the patient to a center participating in the study.

What to Expect in a Clinical Trial

LWWE: What can people expect if they participate in RISE?
AN: The study consists of a period during which the seizures will be observed followed by a time that you would be taking a dose of BHV7000 or a placebo. This is the double-blind phase during which the patient, physician and company running the study do now know which dose or placebo the patient is being given. After this phase people completing the study will have the opportunity to go into a long-term study during which they will be given a dose of the medication which will be known by the patient and the physician.

LWWE: Biohaven seems to do things differently. Would you mind sharing your perspective on that?

AN: For me, Biohaven does and acts the way they say they will. Meaning we are a family here and everyone who participates in our trials become family to us. We develop trials based on the needs of the community. Inclusion of patient groups early and working hard on recruitment is a main focus of our here.  We work hard to bring the latest treatment quickly and safely into the clinics.

Ms. Neumann thank you so much for taking the time to speak with Living Well With Epilepsy in this way. For more information on the RISE Clinical Trial click the button below: