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Multidisciplinary Clinics

Resources for Patients, Advocates, Clinicians & Geneticists

Background

A Hypothesis

 

WOULD RARE EPILEPSIES CARE & RESEARCH BENEFIT

FROM MORE MULTIDISCIPLINARY CLINICS?

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. 

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.

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.

 

Resources

Contact

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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