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Lurie Children’s Memorial Hospital
Staff Information
Andrea Paras, MS
(Clinic coordinator, genetic counselor)
(312)227-6772
aparas@luriechildrens.orgHeather Bausell RD, LDN
(Metabolic dietician)
(312)227-6122
hbausell@luriechildrens.orgKatie Arduini, RD, LDN
(Metabolic dietician)
(312)227-6771
karduini@luriechildrens.orgAmanda Aspan, MS RD LDN
(Metabolic dietician)
(312)227-6768
aaspan@luriechildrens.orgSoo Shim, MS, LCSW
(social worker)
(312)227-3386
sshim@luriechildrens.orgBarbara Burton, MD
(clinic director, metabolic geneticist)
bburton@luriechildrens.orgAngela Dean
(administrative assistant, receives phe levels)
(312)227-6120Rachel Katz, MSW, LSW
(Research Coordinator)
(312)227-6764
rkatz@luriechildrens.orgEmail for diet records for the dietitians.
metabolicdieticians@luriechildrens.org
Clinic Address
225 E. Chicago Ave, Box #59
Chicago, IL 60611-2605
Genetics Phone: 312-227-6120
Genetic Fax: 312-227-9413
3rd floor of Lurie Children’s hospital at 225 E. Chicago Ave
Blood Spot Mailing Address
225 E. Chicago Ave, Box #59
Chicago, IL 60611-2605
Satellite Clinics
Children’s Memorial Hospital Westchester Clinic- (once/ mo.) 2301 Enterprise Drive
Westchester, IL
T 708.836.4800
Wednesday mornings Westchester outpatient facility – 3rd Wednesday of the month, full day
Education/outreach activities:
We are planning an afterhours grocery store tour at Lil’s Dietary shop (the low protein food store in Chicago). This will be held on Thursday August 20th (2015) from about 6:30-8pm. Details to follow.
Research activities:
We continue to recruit subjects at least 18 years of age into the Phase 3 study of the investigational drug pegvaliase ( formerly referred to as PEG-PAL) sponsored by Biomarin. It is likely that recruitment will cease within the next several months when the targeted enrollment has been reached. At that time, all enrolled subjects will be followed until the study is completed at which time the data will be analyzed and submitted to the FDA. We also continue to follow younger children enrolled in PKU-015, the study of the safety and efficacy of Kuvan in patients under six years of age, including subjects enrolled in the first year of life. Data from the first two years of the study have been published and show that the drug is safe in young children and works in the same way as it does in older individuals. Children will be monitored in the study for a total of 7 years to demonstrate that cognitive function is preserved in treated patients. We also have many patients enrolled in the registry referred to as PKU-DOS. This is a study that involves only entering information gathered during the course of routine PKU care into a central registry where it is combined anonymously with data from other clinics. There are over 1000 patients nationally in the registry, which is giving us important information about the long term effects of PKU on patients, as well as answering specific questions such as those related to the safety and efficacy of Kuvan during pregnancy.
2015 Clinic Update – Lurie Children’s Hospital of Chicago
6/25/15
PKU Clinic Update
Division of Genetics, Birth Defects and Metabolism
Ann & Robert H. Lurie Children’s Hospital of Chicago
225 E. Chicago Ave, Box #59
Chicago, IL 60611-2605
Main Genetics number, for appointments – (312) 227-6120
PKU clinic is held on Wednesday mornings
We see patients in our Westchester outpatient location every third Wednesday of the month
We have recently welcomed two new metabolic dieticians, Katie Arduini and Amanda Aspan, as well as a new social worker, Soo Shim. Our PKU Clinic staff is as follows:
Andrea Paras, MS (Clinic coordinator, genetic counselor) – (312)227-6772; aparas@luriechildrens.org
Heather Bausell RD, LDN (Metabolic dietician) – (312)227-6122; hbausell@luriechildrens.org
Katie Arduini, RD, LDN (Metabolic dietician) – (312)227-6771; karduini@luriechildrens.org
Amanda Aspan, MS RD LDN (Metabolic dietician) – (312)227-6768; aaspan@luriechildrens.org
Soo Shim, MS, LCSW (social worker) – (312)227-3386, sshim@luriechildrens.org
Barbara Burton, MD (clinic director, metabolic geneticist) – bburton@luriechildrens.org
Angela Dean (administrative assistant, receives phe levels) – (312)227-6120
Rachel Katz, MSW, LSW (Research Coordinator) – (312)227-6764; rkatz@luriechildrens.org
Education/outreach activities: We are planning an afterhours grocery store tour at Lil’s Dietary shop (the low protein food store in Chicago). This will be held on Thursday August 20th from about 6:30-8pm. Details to follow.
Research activities: We continue to recruit subjects at least 18 years of age into the Phase 3 study of the investigational drug pegvaliase ( formerly referred to as PEG-PAL) sponsored by Biomarin. It is likely that recruitment will cease within the next several months when the targeted enrollment has been reached. At that time, all enrolled subjects will be followed until the study is completed at which time the data will be analyzed and submitted to the FDA. We also continue to follow younger children enrolled in PKU-015, the study of the safety and efficacy of Kuvan in patients under six years of age, including subjects enrolled in the first year of life. Data from the first two years of the study have been published and show that the drug is safe in young children and works in the same way as it does in older individuals. Children will be monitored in the study for a total of 7 years to demonstrate that cognitive function is preserved in treated patients. We also have many patients enrolled in the registry referred to as PKU-DOS. This is a study that involves only entering information gathered during the course of routine PKU care into a central registry where it is combined anonymously with data from other clinics. There are over 1000 patients nationally in the registry, which is giving us important information about the long term effects of PKU on patients, as well as answering specific questions such as those related to the safety and efficacy of Kuvan during pregnancy.