For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
UPDATE JANUARY 2019: MORE ADULTS BOTH WITH AND WITHOUT PKU ARE NEEDED TO PARTICIPATE IN THIS STUDY. PLEASE CONTACT LaurinGrabowsky@Mater.ie IF YOU CAN PARTICIPATE.
From the Mater Hospital:
Phenylketonuria (PKU) Patients Needed for Research
The National Centre for Inherited Metabolic Disorders (NCIMD) – ADULT SERVICE – is conducting a study aimed at better understanding the impact of PKU on cognitive and executive function. Specifically, we want to evaluate the extent to which PKU and its management has influenced thought processes such as IQ, attention, emotional state, memory, and flexibility in performing tasks through tests and interviews.
The study team is also interested in recruiting a control group of participants without PKU who will also be administered these tests and questionnaires for purposes of comparison.
In appreciation of your time, participants will receive travel and meal reimbursement for appointments outside those regularly scheduled.
For more information, please contact the research coordinator at:LaurinGrabowsky@Mater.ie
Please Note: Exclusion criteria include those less than 18 years of age, those without a confirmed diagnosis of PKU, those not currently attending adult service at the Mater Hospital NCIMD- Adult Service, and those otherwise unable or unwilling to undertake testing. If you do not wish to participate, you will not lose the benefit of any medical care to which you are entitled or are presently receiving.