RESEARCH TRIANGLE PARK, N.C. — As part of an award from the Patient-Centered Outcomes Research Institute (PCORI), RTI International has partnered with the Epilepsy Foundation and Columbia University to form a patient-powered research network geared toward improving health care for people with rare epilepsies.
The Collaborative Patient-Centered Rare Epilepsy Network is one of 29 networks approved for a combined $93.5 million from PCORI, an independent, non-profit organization authorized by Congress. The networks will collectively form PCORnet, a new national resource aimed at increasing health research efficiency and providing evidence-based information needed to make informed health care decisions.
The rare epilepsy network, led by the Epilepsy Foundation, includes seven patient advocacy groups representing patients with Aicardi, Dravet, Dup15q, Lennox-Gastuat or Phelan-McDermid syndromes, tuberous sclerosis, or hypothalamic hamartoma. Thesecatastrophic epilepsies are so rare that they are poorly understood. There is little information about the number of people affected, the prognosis and survival, or the effectiveness of some treatments.
Through this award, the network will also help further answer those questions as well as form policies governing data sharing and security, and patient privacy protection.
“The numbers of people with these epilepsies is so small that by combining the groups and their commonalities, we can do better research that is meaningful,” said Barbara Kroner, Ph.D., senior epidemiologist at RTI and co-investigator/epidemiologist of the project.
People with rare epilepsies usually have treatment-resistant seizures which begin in childhood and which dramatically impacts their health, development, cognitive abilities and quality of life.
“We are excited to further the understanding of rare epilepsy and help patients, caretakers and clinicians make more informed health care decisions,” Kroner said. “The network will unite patients, caregivers, researchers, and health care systems, and support research studies of co-morbidities and outcomes within and across the patient groups.”
During the 18-month award, RTI will work closely with the Epilepsy Foundation, patient advocacy groups, and Dale Hesdorffer, Ph.D., co-investigator/epidemiologist from Columbia University, to create the necessary network infrastructure to allow for implementation of research studies and sustainability of the network. RTI will also host the clinical database and maintain the biospecimen repository.
“The patient-focused database created through the PCORI award will help researchers learn from families impacted by these devastating disorders,” said Janice Buelow, Ph.D., the project’s principal investigator and vice president of programs and research at the Epilepsy Foundation. “It also creates an opportunity for individuals and families to be involved in finding answers.”
As part of a separate project, RTI is also developing a prototype mobile seizure alert system to help epilepsy patients and their caregivers cope with seizures.
