MyCP Sign up Questions
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.
Why do we ask at which hospital you or your loved one is treated for CP?
If you indicated that you want to receive email from MyCP and you provide the name of the hospital at which you or your loved one is treated, it enables us to inform you of studies in which you may wish to participate.
If you hospital is not listed, please choose other and write in the name of the hospital. This helps us see if we should expand the coverage of the CP Research Network to other hospitals.
If you or your loved one is treated at multiple centers that specialize in CP, choose the one that you return to most frequently for ongoing care of issues related to cerebral palsy.
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.
Community Registry Survey Questions
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!
MENTOR Frequently Asked Questions
When and how often do classes meet?
The classes are scheduled five days a week during the day for one hour each day. The time is the same each day on a given course topic, e.g., nutrition or exercise, but the standing times for those classes may vary. The course goes for eight weeks and new classes generally start during the first week of each month.
Are there only people with CP in the classes?
No, the classes will have people with a variety of causes of disability.
Do I need my own exercise equipment? Is any exercise equipment required?
No. MENTOR actually provides you with some basic exercise equipment that you get to keep at the end of the course! It will be shipped to your home/apartment after you start the course.
What does it cost to participate in MENTOR?
Nothing, MENTOR is free of charge.
What do I need to participate in MENTOR?
You need an internet connection and a device such as a laptop, phone, or iPad so that you can see and communicate with instructors. Any helpful items you may need for classes (such as fitness equipment) will be mailed to you free of charge.
Do I have to attend every class?
It is encouraged that you attend all the classes to get the most benefit from the program. However, if you do need to miss a class for any reason, please notify your instructor so they know not to expect you for that lesson.
How much time will I need for the program on a daily basis?
You need one hour. MENTOR runs five days per week for eight weeks. The class time schedules will be consistent throughout the program.
Where will the classes take place?
All MENTOR classes will take place via Zoom meeting.
How will I keep track of classes?
The GetHealthie portal is your gateway to MENTOR. Inside Healthie, you will find links to classes, informational leaflets from lessons, and options to engage with your instructors and fellow participants.
Can I have one-on-one instruction alongside group classes?
Absolutely! In addition to participating in the group classes, if you want a more tailored approach or wish to address an issue privately, contact your instructor for options.
Can I ask questions of the instructors?
Yes! We encourage you to ask questions so that you can get the most knowledge from the program. Please feel free to ask questions during Zoom classes (you can use the chat feature if you like) or contact instructors through the Healthie portal.
Can exercises be modified?
Yes, the exercises in MENTOR have been adapted for individuals with disabilities. However, if you need a different adaptation, ask your instructor and they will be happy to find a modification that works for you. Please only do what feels safe and comfortable for your body.
Do I need to have experience with cooking?
No, you do not need to be an experienced cook. Lessons cover cooking demonstrations, adaptive kitchen equipment, and nutrition. The final nutrition class encourages participants to present a healthy recipe for a class book, but this is not mandatory.
Cerebral Palsy Frequently Asked Questions (FAQ)
- What is cerebral palsy (CP)?
- Cerebral palsy (CP) is the most common cause of motor (movement) disability in children and includes a large adult population. The term cerebral palsy describes a group of movement disorders caused by an injury or disturbance in the early developing brain, specifically the sensorimotor areas involved with creating, coordinating and controlling movement and posture. Learn more about cerebral palsy here!
- How is CP diagnosed?
- Diagnosing cerebral palsy (CP) has not always been an easy path. In the past physicians would “wait and see” how the child developed before making a diagnosis. This left families in a state of limbo wondering about their child’s development. There are now standard evaluations of movement that can be used with existing tests and tools to decide with high accuracy, and in some cases in infancy, if a cerebral palsy diagnosis is appropriate. Not all children who miss developmental milestones have cerebral palsy. Screening for cerebral palsy should be done when a child has risk factors for developing cerebral palsy. Learn more about how cerebral palsy is diagnosed here!
- What causes cerebral palsy?
- Cerebral palsy can be caused by a brain injury or an interference in brain development. Sometimes these disturbances occur because of genetic changes. Learn more about cerebral palsy causes here!
- Is cerebral palsy genetic?
- When cerebral palsy (CP) is not able to be diagnosed through easily identified risk factors, such as prematurity, a lack of blood flow to the developing brain, or infection during development, then genetic cerebral palsy should be considered.
Learn more about genetic cerebral palsy here!
- When cerebral palsy (CP) is not able to be diagnosed through easily identified risk factors, such as prematurity, a lack of blood flow to the developing brain, or infection during development, then genetic cerebral palsy should be considered.
- How is cerebral palsy treated?
- Cerebral palsy treatment options will vary, depending on the symptoms presented by the type of CP the person is diagnosed with. It is common that multiple treatments and therapies be combined to address the symptoms while also supporting development. Learn more about cerebral palsy treatments here!
- Does cerebral palsy get worse?
- The injury that causes cerebral palsy is permanent and does not worsen, but the symptoms of a person’s cerebral palsy may change over time.[1]
Learn more cerebral palsy facts here!
- The injury that causes cerebral palsy is permanent and does not worsen, but the symptoms of a person’s cerebral palsy may change over time.[1]
- Can my child with CP go to college?
- As our children move from childhood to adulthood, college may be on the agenda. Young people with cerebral palsy face more hurdles than most when it comes to higher education, but there are many ways to help them reach their full potential and achieve greater independence.
Learn more about cerebral palsy and college here!
- As our children move from childhood to adulthood, college may be on the agenda. Young people with cerebral palsy face more hurdles than most when it comes to higher education, but there are many ways to help them reach their full potential and achieve greater independence.
- What is the cerebral palsy life expectancy?
- Lifespans of people with cerebral palsy are often similar to those without cerebral palsy.[2]
Learn more about transitioning from childhood to adulthood with cerebral palsy here!
- Lifespans of people with cerebral palsy are often similar to those without cerebral palsy.[2]
- What does the Cerebral Palsy Research Network (CPRN) do?
- The Cerebral Palsy Research Network has been established to conduct several types of clinical research and quality improvement projects to improve healthcare for people with cerebral palsy. The network is intended to create a collaborative environment for clinical researchers to establish study questions and quality initiatives. The preliminary data provided by the registry will allow researchers in the network to write more robust grant applications to public funders because of the richness of the data and the proven collaboration of the network.
Learn more about the Cerebral Palsy Research Network here!
- The Cerebral Palsy Research Network has been established to conduct several types of clinical research and quality improvement projects to improve healthcare for people with cerebral palsy. The network is intended to create a collaborative environment for clinical researchers to establish study questions and quality initiatives. The preliminary data provided by the registry will allow researchers in the network to write more robust grant applications to public funders because of the richness of the data and the proven collaboration of the network.
- What is MyCP?
- MyCP is a web portal within the CP Research Network to provide access to personalized information about CP, access to free services like our fitness program, private discussions with peers and clinicians, and the option to contribute to research through surveys. Joining the MyCP community is free. We ask you a few questions about your relationship to cerebral palsy (are you a person with CP, a caregiver, provider, etc.) and if you or your loved one has CP, about the diagnosis. And then you can participate in the MyCP programs and services. Learn more about the MyCP here!
The information from this page appears in our free and downloadable cerebral palsy tool kit.
References
- National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. (2020, December 31). What is Cerebral Palsy? Retrieved from https://www.cdc.gov/ncbddd/cp/facts.html
- Iona Novak, P. (2017, September 01). Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy. Retrieved from https://jamanetwork.com/journals/jamapediatrics/article-abstract/2636588[abstract]
