The Aicardi Syndrome Foundation is one of 10 organizations representing a rare epilepsy to receive funding from the Epilepsy Foundation through a contract from PCORI (Patient-Centered Outcomes Research Institute). The Epilepsy Foundation will bring together the following partner organizations to form the Rare Epilepsy Network (REN): Dravet Syndrome Foundation/ICE, Hope for Hypothalamic Hamartomas, Aicardi Syndrome Foundation, Phelan-McDermid Syndrome Foundation, Tuberous Sclerosis Alliance, Dup15q Alliance, Lennox-Gastaut Syndrome Foundation, International Foundation for CDKL5 Research, Aarons Ohtahara, and PCDH19 Alliance.
The Epilepsy Foundation award is one of 18 Patient-Powered Research Networks awards made by PCORI which, along with 11 Clinical Data Research Networks, together will form PCORnet: the National Patient-Centered Clinical Research Network. Each of the individual patient-powered networks will create a national registry of patients with corresponding survey and medical data in order to be able to conduct research that is meaningful to and driven by the patients and caregivers.
This is exciting news for our organization. The funding received will help us raise awareness, enhance research and promote studies in learning more about our children with Aicardi syndrome.
During the next 18 months, the Epilepsy Foundation-led team will use the PCORI funds to create a registry of individuals with rare epilepsies and to increase patient/caregiver engagement in research and health care decisions. The team, which will include Aicardi families, will also be part of the process to develop policies governing data sharing and security and protection of patient privacy. Participation of families in the REN committees and in contributing data to the registry will be critical to the success of the network and the opportunity to continue receiving funding. The REN will begin data collection sometime in April and families will be notified of this opportunity through email blasts and social media.
The funding from the Epilepsy Foundation will be matched by the Aicardi Syndrome Foundation and used to establish a research grant dedicated to improving the quality of life of children with Aicardi. The first grant will be awarded in early 2015. With families supporting our ongoing research efforts, we may all contribute to the mission of finding better treatment options and improving quality of life.
If you have any questions about the rare epilepsy network, how you can become involved in the committees, or what research questions the network should address, please contact Carrie Paup or Barbara Kroner.
The Collaborative Patient-Centered Rare Epilepsy Network was selected through a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data; how well they will engage patients and other stakeholders; and their ability to maintain data security and patient privacy among other criteria.
The Patient-Centered Outcomes Research Institute is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.