Dear Parent, The purpose of this screening survey is to see if your family meets the criteria for taking part in BRIDGE's research study to learn more about the brain and behavior in children with RASopathies. Another purpose is to see if you want to hear about other research studies that will be done in the future; we are keeping a database of contact information to use for future research purposes.
If you have any questions and/or would prefer to provide this information over the phone, please email the study coordinator, Lital Schwartz, and Chloe Alexa McGhee at bridgelab@stanford.edu . Due to overwhelming interest in the study, there may be wait times of several weeks to months for telephone screening appointments. If you have concerns or complaints about this screening survey, please contact the Principal Investigator of the study, Dr. Tamar Green, at 650-724-3054.
If you want to talk to someone separate from the research team about a concern or complaint or your rights as a possible research subject, please contact the Stanford Institutional Review Board (IRB) to speak to an informed person who is separate from the research team, at 650-723-5244 (for medical studies), 650-723-2480 (for non-medical studies), or toll-free at 1-866-680-2906.
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You may choose not to answer these questions. You also may choose to stop participating in this survey at any time. Your information will be kept as confidential as possible as required by law. You can choose if you want or do not want to participate in this research screening procedure - it is up to you. If you refuse to answer the questions or stop answering them at any time, there will be no penalty, and you will not lose any benefits to which you otherwise would be entitled. The risk of taking part in this survey is very small. The survey is not designed to ask you for sensitive personal information, but some people may feel uncomfortable answering these questions. If you qualify to take part in the study and are interested in taking part in it or future research studies, then your name and information will be kept confidential. If you are not interested in the study, please close the survey window now.
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About BRIDGE
BRIDGE, a research lab at Stanford University, focuses on pediatric clinical neuroscience, with an emphasis on neurogenetic and neurodevelopmental disorders, such as attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders. The principal aim of our research program is to uncover the effects of genetic variation and associated downstream pathways on human brain development. In contrast to traditionally starting with the cognitive and behavioral symptoms that define ADHD and autism spectrum disorders, our lab takes a "genetics first" approach and studies children with neurogenetic syndromes who present with neurodevelopmental disorders. Using a combination of genetic, imaging, and behavioral assessments, we aim to contribute to the understanding of abnormalities across "idiopathic" neurodevelopmental disorders such as ADHD, autism spectrum disorders, and cognitive dysfunction (learning disorders and intellectual disability).
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Parent's Date of Birth (e.g., John Smith 01/01/1980)
Parent 1 - Relation to Child
Biological Parent
Step Parent
Adoptive Parent
Foster Parent
Grandparent
Parent's cohabitant
Other
Does parent 1 have any of the following diagnoses:
* must provide value
Neurofibromatosis type-1
Noonan Syndrome
No known genetic disorder (typically developing)
Other
Parent 2 - Relation to Child
Biological Parent
Step Parent
Adoptive Parent
Foster Parent
Grandparent
Parent's cohabitant
Other
Does parent 2 have any of the following diagnoses:
* must provide value
Neurofibromatosis type-1
Noonan Syndrome
No known genetic disorder (typically developing)
Other
If needed, are we able to leave a detailed message on your answering machine for the numbers listed?
Yes
No
Address (City, State and zipcode):
* must provide value
Child's Full Name (First, MI, Last):
Date of Birth:
* must provide value
MM/DD/YYYY
Male
Female
Does your child have any of the following diagnoses:
* must provide value
Neurofibromatosis type-1
Noonan Syndrome
No known genetic disorder (typically developing)
Other
If other, please specify:
If your child was diagnosed with Noonan syndrome, which genetic mutation does your child have?
PTPN11 SOS1 RAF1 Other
If other, please specify:
What is the approximate date of when your child was first diagnosed with Neurofibromatosis type-1 or Noonan Syndrome?
Today M-D-Y
If your child has Neurofibromatosis type-1 or Noonan Syndrome, have they been genetically tested and/or do you know their karyotype (an organized profile of the number, shape, and size of a person's chromosomes)?
Yes
No
Would you be able to send us the genetic testing information so that we can have it on file for our records?
Yes
No
Would you like to complete the survey now?
Yes
No
Does your child have braces?
Yes
No
When do you anticipate that they will be removed?
Today M-D-Y
Siblings' names and DOBs or ages:
What is your child's current height? (feet and inches)
What is your child's current weight? (pounds)
Does your child have any physical or sensorimotor conditions (e.g. using a walker or wheelchair)?
Yes
No
When is your child most calm (activity, time of day: morning, afternoon, evening)?
What does your child do when he/she is anxious? Does your child hurt self and/or others?
Is your child left or right handed?
L
R
Ambidextrous
Has your child ever had an IQ test?
Yes
No
Today M-D-Y
Describe results if known:
Has your child had any other recent testing (behavioral, etc.)?
Yes
No
Describe results if known:
What is your child's native language?
Is your child fluent in English?
Yes
No
Have you ever suspected that your child had learning differences/difficulties in school?
Yes
No
In your own words, please describe your child's learning differences, when you first began to notice them, and what factors may have contributed to their development.
Has your child ever had special classes in school?
Yes
No
Yes
No
At what grade level?
How does your child make his/her needs known?
Does your child use full sentences?
Yes
No
Can your child follow simple instructions with 2-3 steps?
Yes
No
Was your child born prematurely (before 37 weeks of pregnancy)?
Yes
No
How long was your pregnancy (in weeks)?
What was the birth weight in pounds and ounces?
Has your child ever had any serious medical or surgical problems?
Yes
No
Please check all that apply:
Has your child ever have surgery of any type?
Yes
No
Has your child ever been hospitalized?
Yes
No
Please specify the reason and date:
Has your child ever had any neurological problems?
Yes
No
Has your child ever had any of the following medical conditions?
Has your child ever had any seizures?
Yes
No
Please describe type, date of occurrence, how many and duration, medications
Is your son or daughter now seizure free?
Yes
No
Does your child have a genetic condition other than Neurofibromatosis type-1 or Noonan Syndrome?
Yes
No
Please specify:
Has your child entered puberty?
Yes
No
What physical changes have you started to notice?
As part of this study, we might need to conduct a blood draw. Can you tell me a bit about how your child responds to needles?
Has your child taken any medications oner the last 12 months (inclucing Growth Hormone)?
Yes
No
Please specify medication, dose, unit (mg, ml, IU, mg/ml, mg/kg), frequency, date started, date stopped (or ongoing), reason for the medication.
Does your child have any allergies (particularly to medications)?
Yes
No
Please specify what is your child allergic to and what is the allergic response.
Has your child ever been diagnosed and/or treated for any following psychiatric conditions:
Yes
No
Has your child ever been treated for drug or alcohol dependence?
Yes
No
Does your child wear glasses or contacts?
Yes
No
Please approximate prescription:
Does your child have a retainer?
Yes
No
Please describe length, width, material.
Is the retainer removable (i.e. easily by the wearer) or permanent (i.e. orthodontist needs to remove it)?
Does your child have ear tubes?
Yes
No
Are they surgically implanted? Metal?
Does your child have any other metal in the mouth or head?
Yes
No
Does your child have any facial tattoos including tattooed eyeliner?
Yes
No
Has your child worked with metal, or have had metal removed from eyes, body, etc.?
Yes
No
Does your child have any pierced body parts, including ears?
Yes
No
Does your child have any other metal implants. clips, valves, pacemaker, etc. in their body?
Yes
No
Does your child have hair dye or hair extensions currently in place?
Yes
No
Has your child had a MRI scan before? If yes- was it successful and/or were there any techniques used that were helpful to make it successful?
How does your child usually respond to new experiences and meeting new people?
How does your child usually respond when he/she is asked to stay in one place?
How does your child usually respond when he/she is in an enclosed space?
How does your child usually respond to loud noises?
What kind of rewards does your child respond to?
Where did you hear about the study?
* must provide value
1. Facebook page 2. Instagram 3. Google Search 4. Conference 5. Referred by a friend 6 Physician 7. Other
If referred by a friend, who?
Is there anything else that you'd like us to know about your child and his/her potential participation in our study?