Why do we ask for the person’s full name as it appears on the birth certificate?

We use the full name in combination with the birthdate and gender to generate a unique ID. We do not store the full name. The unique ID is use to connect the participant data to other study data to increase the learning that comes from the research. The unique ID cannot be used to re-identify the participant.


How do you protect my privacy and manage the answers I provide to surveys?

  • The information you enter here is private and will not be shared with other members without your express permission.
  • The Cerebral Palsy Research Network (CPRN) has access to the data for the purposes of research.
  • You will be asked to sign an informed consent agreement, a document describing the nature of the research and your rights, before your data is used for research or before you can participate in any studies.
  • All research data is stored at the University of Utah in its secure, Health Insurance Portability and Accountability Act of 1996 (HIPAA) compliant data center.

Can I participate if I am younger than 18?

You can sign up for MyCP if you are 13 years older or older but we are only offering surveys to adults and caregivers at this time.


What is GMFCS and why is it important?
The section of questions about Gross Motor Function describe different ways your child with CP may sit or move. They are descriptions that are meant to capture your child’s current abilities and how they typically move throughout their day, rather than their best effort. These are not intended to be judgements about your child. We know that regardless of a child’s movement abilities they each have their wonderful and cherished unique strengths.

We are asking these questions to provide you with information (which you will receive by email) that healthcare providers use to better understand what supportive equipment, treatments and care are best suited to meet your child’s needs. We are also asking this information for research purposes and to improve outcomes for our community. By understanding how people with different levels of impairment respond to treatments/interventions, we will be able to improve treatment options for people with CP like your child.

To learn more, read our overview of the importance of GMFCS.


What is the GOAL questionnaire and why should I complete it?

The GOAL questionnaire is intended for persons with CP who can walk.

The GOAL questionnaire assesses how persons with CP rate themselves (or are rated by their parents), about various issues related to their walking, physical activities and independence. The GOAL also identifies the issues that the person with CP wants to improve.

The items of the GOAL are those that children with CP and their parents have said are important to them.

When you complete the GOAL questionnaire, you are reporting how well you feel you do (or your child with CP does) for each question. You can also report for each item whether that item is something you want to improve. When you complete the GOAL, you will receive your (your child’s) score, and a list of items that are important goals you wish to address. You can share that list with your health care providers to bring to their attention what your priorities and goals are. Doctors and therapists can use this information to discuss these priorities and recommend which treatments might best achieve those goals. Once treatment is completed, the GOAL questionnaire can be used to determine how well those goals were achieved or not.

Why are we asking you to complete it on MyCP?

We would like to test how it works as a tool to identify what is important to the broader community of persons with CP (or their parents). This will help us identify the global set of priorities that health care providers should be addressing.

The GOAL takes about 20 minutes to complete. Thank you!


What is the CPCHILD questionnaire and why should I complete it?

The CPCHILD questionnaire is intended for persons with CP who rely on a wheelchair for most of their mobility.

The CPCHILD questionnaire assesses how parents or caregivers rate their child (or how a child rates him/herself when able) about various issues related to daily activities, self care, getting around, comfort, communication, social interaction and health. The CPCHILD also identifies which of these issues the parents (or the child) feel are important to improve.

The items of the CPCHILD are those that parents and caregivers of children with CP have said are important to them.

When you complete the CPCHILD questionnaire, you are reporting how well you feel your child does (or you do) for each question. You can also report for each item whether that item is something you want to improve. When you complete the CPCHILD, you will receive your child’s (your) score, and a list of items that are important goals you wish to address. You can share that list with your health care providers to bring to their attention what your priorities and goals are.  Doctors and therapists can use this information to discuss these priorities and recommend which treatments might best achieve those goals. Once the treatment is completed, the CPCHILD questionnaire can be used to determine how well those goals were achieved or not.

Why are we asking you to complete it on MyCP?

We would like to test how it works as a tool to identify what is important to the broader community of parents and caregivers of persons with CP (or the persons themselves, when able). This will help us identify the global set of priorities that health care providers should be addressing.

The CPCHILD takes about 20 minutes to complete. Thank you!