Chicago, IL, Children's Memorial Hospital of Chicago announced today that it has received a grant from BioMarin Pharmaceutical Inc. to support its Adult Phenylketonuria (PKU) Outreach Education Project. The goal of the program is to conduct outreach to PKU patients who are no longer being treated at PKU clinics to encourage them to return for further education about recent developments in the management and treatment of PKU.
"According to our records, approximately 250 PKU patients are not currently being seen in our clinic on a regular basis. This illustrates the magnitude of the problem and suggests that there may be as many patients currently outside the healthcare system as there are receiving care," said Barbara Burton, M.D., Director, PKU and Metabolic Disease Clinic, Children's Memorial Hospital, Chicago. "Untreated PKU can have severe neurological implications, including impaired cognitive function, mood disorders, mental illness and brain damage. Through specific targeting efforts, we hope to reach out to patients who are not receiving care to educate them about new options and advances in the treatment of PKU so that they can learn to manage and possibly avoid the severe neurological implications associated with untreated disease."
The goal of the project is to connect with each PKU and hyperphe patient not currently receiving care and encourage them to attend educational sessions arranged by Children's Memorial on the treatment of PKU and maternal PKU. The program will also identify additional outreach strategies that are most effective in reaching adult PKU patients who can benefit from new management guidelines and techniques.
"We are very pleased to provide this grant to Children's Memorial Hospital in support of this pilot program," said Steve Aselage, Senior Vice President of Global Commercial Development at BioMarin. "It's an important campaign and we applaud Dr. Burton and her team for proactively reaching out to these patients to bring them back to the clinic to receive the medical care they deserve."
|Contact: Julie Pesch|
Children's Memorial Hospital