REN
Projects & Workgroups
On This Page
Clustering
Many rare epilepsies ahre commonalities across their diseases regardless of their cause / etiology. REN's strategic objective for 2023-2024 is to focus on how rare epilepsy organizations can work together to move the rare epilepsy field forward.
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In December 2023, REN's focus at our annual breakfast at AES followed this idea. During the meeting, four presenters spoke about their experiences working on projects that benefited multiple epilespy stakeholders. After presentations, attendees brainstormed ways in which groups can continue to collaborate. Here are some ideas that were proposed.
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A summary from the meeting is in the process of being written with plans to publish the findings in a proceedings journal. REN will also be following up with our membership to track collaorations among groups well into 2025.
Multi-Disciplinary Clinics
A Hypothesis
WOULD RARE EPILEPSIES CARE & RESEARCH BENEFIT
FROM MORE MULTIDISCIPLINARY CLINICS?
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WINTER 2021 - REN LUNCH @ AES 2021
To obtain an overview of the multidisciplinary clinic landscape, REN organized a lunch during the AES 2021 meeting focused on this topic. The 2021 luncheon included 73 attendees representing 27 Patient Advocacy Groups,16 epilepsy centers; 6 industry, and government representatives.
REN invited keynote speakers, Dr. Pete Davis (Boston Children’s) and Dr. Scott Demarest (Children’s Colorado) to present on their experiences in standing up and overseeing multi-disciplinary clinics through the lens of a single disease and multiple disease clinics. Dr. Davis presented on a large networked single syndrome Clinics for Tuberous Sclerosis Complex. Dr. Demarest presented on Small MDC Clinics for Really Rare or Early-Stage Epilepsies.
Attendees participated in two break out activities. First, participants were organized into tables comprised of attendees from each of the stakeholders groups (mixed stakeholder breakouts). Each table engaged in discussions exploring: (1) what are the supports and obstacles to creating Multi-disciplinary clinics; (2) What are 5 interventions to get from where we want to be followed by a report out on the most promising interventions. For activity two, ‘like stakeholders’ (eg., all PAGs, all clinicians, all industry representatives) were gathered together to describe the value of MDCs through their unique lens. Additionally, they were asked to describe examples of successful MDC models.
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SPRING 2021 - A MDC WORK GROUP IS FORMED
Following the luncheon, REN launched a MDC Work Group comprised of volunteer leaders from the REN membership.
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FALL 2022 - CLINICIAN & CAREGIVER SURVEYS ARE LAUNCHED
The work group crafted two surveys - one targeting clinicians and another targeting caregivers to gather their first-hand experiences with multidisciplinary clinics in practice. The work group analyzed the surveys and presented their findings during the 2022 REN breakfast gathering.
WINTER 2022 - REN BREAKFAST @ AES 2022
The 2022 REN Breakfast gathering included 101 participants including 23 clinicians from 13 institutes nationwide, 4 young investigators, 58 patient advocates representing 29 organizations, representatives from the National Association of Epilepsy Centers, and 13 Industry representatives came together.
Following the survey presentation, a panel was convened including clinicians Dr. Timothy Benke (Children’s Hosptal Colorado), Dr. Darcey Krueger (Cincinatti Childrens), Dr. Amy Brooks-Kayal (UC Davis Health Medical center), Nurse Practitioner and Clinical Coordinator Erin O’Connor (CHOP) and advocate Karen Utley (IFCR). The Panel was moderated by Priya Balasubramanian, CURE Epilepsy. The panel explored MDC structure relationship to clinical trials implementation, long term sustainability, key considerations for launching a new MDC, what distinguishes an MDC from another among other topics of interest.
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Work Group:
Jordans Guardian Angels: Carole Bakhos; Malan Syndrome: Christal Delagrammatikas & Kim Ventarola; CFC Syndrome & RASopathies Network: Tuesdi Dyer; Ring14 USA: Yssa DeWoody; KDVS Foundation: Ashley Point; Dup15Q Foundation: Vanessa Vogel Vogel-Farley; STXBP1 Disorders: Jackie Steinberg & Charlene Son Rigby; Angelman Syndrome Foundation: Amanda Moore; Admin: Rare Epilepsy Network: Ilene Penn Miller.
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REN Registry
About Our Dashboard
REN was originally formed/created to develop a rare epilepsy registry. With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN patient registry collected information about people living with rare epilepsies, such as medications, comorbidities, and seizure therapy, to better understand these conditions and improve treatment, lives, and quality of care for people living with them.
The REN registry interactive dashboard reflects some of the patient and caregiver data collected between 2014 and 2018 from 1,459 participants across 40 rare epilepsy diagnoses. [Note: This website works best when used with Google Chrome as your browser.]
Lead: Kathleen Farrell
EF, kfarrell@efa.org
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Data Sharing Committee:
Megan O’Boyle, PMSF
Brandy Fureman, EF
Steve Roberds, TSC Alliance
Vanessa Vogel-Farley, Dup15q
Ilene Miller, REN
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Transitions of Care
What We Are
We coordinated a work group to create tools that could be used by individual organizations to help with patient transitions to adulthood and long-term care considerations.
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Projects/Resources
A work group developed an Adult Transition Checklist which can be adapted for use by specific organizations.
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The work group has also made a Google folder with resources for Adulthood Transitions.