Patients and Caregivers Application

Patient & Caregiver Application
Which role(s) do you play with regard to UCDs? Please check all that apply*

PatientCaregiverBereaved parentUCD carrier (you possess one gene mutation but do not have symtpoms)
Patient Experience

For the following questions, "affected person” refers to a person living with a UCD. You may answer for yourself or on behalf of another family member. If your family includes multiple people living with UCDs, please choose one person's experience to describe on this form.
What UCD subtype does the affected person have?*
How old was the affected person when they first experienced symptoms of a UCD?*
How old was the affected person when they were correctly diagnosed with a UCD?*
In what year was the affected person diagnosed?*
How was the affected person initially diagnosed?*

Prenatal testingNewborn screeningFamily history (for example, family member tested following a child's diagnosis)Clinical/biochemical testing (blood ammonia, amino acid, orotic acid)DNA mutational analysisPostmortemOther
Please specify "other" method of diagnosis
Has the affected person had a liver transplant?*

YesNo
Is the affected person currently seen at a metabolic care center?*

YesNo
Metabolic care center name*
Approximately how many hours does the affected person have to travel for metabolic care?*
Your Demographics

We are collecting this information about you as a potential Partner Network member to help ensure we select a diverse sample of the UCD community, allowing us to capture a range of experiences. All information will be kept strictly confidential.
Which best describes your gender?*
What year were you born? (you must be at least 18 to participate as a member of the Partner Network)*
Please select what you consider your race to be (you can select more than one)*

WhiteBlack or African AmericanHispanic or LatinoAmerican Indian and Alaska NativeAsianNative Hawaiian and Other Pacific Islander
In which country do you currently reside?*
In which state do you currently reside?
What is your combined annual household income (in US dollars)?
Are you able to participate in an English language focus group?*

YesNo
Your Contact Information
Name*

First NameLast Name
Email*
example@example.com
Phone Number (needed in case our emails don't reach you)*
Please enter a valid phone number.
I agree that you may contact me via text messaging (msg and data rates may apply)*

YesNo
Please verify that you are human *
Thank you for your interest in joining the NUCDF Partner Network project. We will be reaching out to selected network members in Fall 2025. Please subscribe to our newsletter and follow news about this project on our website at https://nucdf.org.
Should be Empty:

Patient & Caregiver Application

Patient Experience

Your Demographics

Your Contact Information

Thank you for your interest in joining the NUCDF Partner Network project. We will be reaching out to selected network members in Fall 2025. Please subscribe to our newsletter and follow news about this project on our website at https://nucdf.org.