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REN is comprised of mature organizations as well as those newly formed. We are frequently asked for resources for starting a new rare epilepsy organization. There are many resources for starting a nonprofit. We have listed a few below to help.
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REN
Registry
Overview
The Rare Epilepsy Network (REN) registry is a comprehensive database designed to collect and organize detailed information about individuals with rare epilepsies. The registry includes data on over 1,459 patients spanning across 40 distinct rare epilepsy disorders. It provides researchers, clinicians, and stakeholders with valuable insights to help advance the understanding, treatment, and care of these unique conditions.
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Background
The REN registry captured a wide array of information critical to epilepsy research and patient care. This data includes comorbidities, developmental milestones, seizure medications and their side effects, seizure history, and more. By leveraging this robust dataset, professionals can track disease progress and enhance treatment plans tailored to the needs of individuals with rare epilepsy disorders. The REN registry, was made possible through funding from the Patient-Centered Outcomes Research Institute (PCORI). PCORI's support helped ensure that data collection is patient-focused and contributed directly to improving treatment and outcomes for those with rare epilepsy disorders.​​​​​​​​​​​​​​​​​​​​
Access Data
To explore and utilize REN data, visit the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) portal. The platform includes not only REN data but also information on over 34 diseases, including Angelman Syndrome, CACNA1A, hnRNP, KIF1A, Kleefstra, LGS, Prader-Willi, Sturge-Weber, and Tuberous Sclerosis, many of which overlap with rare epilepsy.​​​​​​​​​
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Contribute to RDCA-DAP
If your organization is interested in contributing data to RDCA-DAP, you can complete this form. By contributing, you can help enhance the platform's value for the entire rare epilepsy research community, facilitating advancements in treatment and care for those affected by these conditions.
Publications
The REN registry has led to the publication of several critical studies:
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Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network – explores the health conditions that often accompany rare epilepsies.
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Factors Associated with Caregiver Sleep Quality Related to Children with Rare Epilepsy Syndromes – examines the impact of rare epilepsy on caregiver well-being.
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Risk Factors For Pneumonia In Rare Epilepsy Syndromes – identifies factors contributing to pneumonia risk in rare epilepsies.
Additionally, the registry's work is supported by The Epilepsy Foundation Leads in the Rare Epilepsy Network PCORI Award, underscoring the Foundation's leadership in driving rare epilepsy research forward.
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Interactive Dashboard
To further explore REN data, utilize the original interactive dashboard. This tool offers a user-friendly interface to visualize and analyze patient data across various rare epilepsy conditions. The dashboard enables detailed exploration of trends, treatment outcomes, and more, helping to foster advancements in both research and care.
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Citations
1. Ho, N. T., Kroner, B., Grinspan, Z., Fureman, B., Farrell, K., Zhang, J., Buelow, J., Hesdorffer, D. C. (2018). Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network. The Journal of Pediatrics, Volume 203, December 2018, Pages 249-258.e5.
2. Hesdorffer, D. C., Kroner, B. L., Shen, J., Farrell, K., Roberds, S., Fureman, B. (2020). Factors Associated with Caregiver Sleep Quality Related to Children with Rare Epilepsy Syndromes. The Journal of Pediatrics: X, Volume 2, Spring 2020.
3. Hesdorffer, D. C., Kroner, B., Grinspan, Z., Fureman, B., Zhang, J. (2017). Risk Factors For Pneumonia In Rare Epilepsy Syndromes. Abstract number: 1.406. Epidemiology Submission, 2017.
4. Epilepsy Foundation. The Epilepsy Foundation leads in the Rare Epilepsy Network PCORI Award.