Results Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including the Rare Epilepsy Network (REN), participated as Partner Networks in PCORnet.

PCORI funded REN’s participation in PCORnet from 2015 to 2018. This report outlines REN’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, families, and caregivers in decision making about the network
  2. Create a way to collect and share data reported by patients for research
  3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
  4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

REN is a PPRN that includes people who have one of the more than 40 rare types of epilepsy and their caregivers. Epilepsy is a disease in which abnormal brain activity causes seizures. Many types of epilepsy exist; any type that affects fewer than 200,000 people is considered rare. REN connects patients, caregivers, families, advocates, and researchers to encourage research that improves the diagnosis, treatment, and quality of life of people with rare epilepsies. As of April 2019, the REN network included 1,459 people who were affected by rare epilepsies, including patients and caregivers.

Title Rare Epilepsy Network (REN)
Network design Patient-Powered Research Network (PPRN)
Lead partners The Epilepsy Foundation
Other partners RTI International
Columbia University
32 rare epilepsy organizations
Participants 1,459
Area(s) of focus Rare epilepsies

How does the network operate?

REN created online surveys to gather data from adults with rare epilepsies, caregivers of children with rare epilepsies, and caregivers of adults with rare epilepsies who couldn’t complete the surveys on their own. These surveys asked about participants’ age and sex and where they lived; diagnosis and treatment; medical history; and quality of life. Patients or their caregivers could also upload medical reports.

REN set up a steering committee to make network decisions. The committee included a representative from the Epilepsy Foundation, researchers, and one representative from each of 32 rare epilepsy organizations. An executive committee helped foster communication between PCORnet and the steering committee. The executive committee also included researchers, one of whom is a caregiver for a child with a rare epilepsy, and representatives from the Epilepsy Foundation and a rare epilepsy foundation.

How did the network involve patients and other partners?

Patients, families, and caregivers were important contributors to REN. Patients and families were members of the steering committee and helped create the online surveys.

Who is in the network?

REN had enrolled 1,459 participants as of April 1, 2019.

Population (as of 04/01/19)


  • 62% white
  • 4% mixed race
  • 2% black
  • 2% Asian
  • 22% no information
  • 8% Hispanic


  • 51% female
  • 44% male
  • 5% no information


  • 62% 17 years or younger
  • 25% 18–44 years
  • 2% 45–64 years

How does the network support future research?

The Epilepsy Foundation will maintain and share REN survey data and continue to support REN, which is part of the Epilepsy Learning Healthcare System, a PCORI-funded project that provides funding and technical assistance to help communities, clinicians, and institutions improve health outcomes through quality improvement and research.


Institutional Review Board (IRB): A group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.

Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

Engagement Resources

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Project Information

Brandy Fureman, PhD^
Epilepsy Foundation
Collaborative Patient-Centered Rare Epilepsy Network

Key Dates

July 2015
March 2019

Study Registration Information

^Janice M. Buelow, PhD, RN, was the original principal investigator for this project.


Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 27, 2023