Consents By registering my child in The Carter Centers’ International HPE Registry, I give my permission to have my family’s name and address and my child’s clinical information included in the registry. Your permission to add your child’s health information to the registry is greatly appreciated, but it is completely voluntary. If you choose not to allow us to add your child’s health information to the registry, this will not affect your care at any of The Carter Centers.
*
Question - Required -
I further give my permission to: (check all that apply)
* I understand this may bring direct requests to me from researchers for participation of my family in other research projects.
** I understand my child’s name and personal information will be removed from anything that is shared with others.
*
Question - Required -
I give my permission for the following information to be shared with other researchers: (Please choose only one)
Clinical information only (NOT name and address)
Name and address only (NOT clinical information)
Clinical information AND name and address
*
Question - Required -
Full Name
*
Question - Required -
Today's Date
Month
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Question - Not Required -
Relationship to Patient
No matter what options you choose, you reserve the right to contact researchers independently and directly. You may also cancel or revise this release at any time by submitting a written notice to:
THE CARTER CENTERS FOR BRAIN RESEARCH IN HOLOPROSENCEPHALY AND RELATED MALFORMATIONS
Texas Scottish Rite Hospital for Children 2222 Welborn Street, Dallas, TX 75219
Phone: 214 559-8411 | Fax: 214-559-8383 | E-mail: hpe@tsrh.org
Patient Information
*
Question - Required -
Patient's Full Name (first and last)
*
Question - Required -
Date of Birth
Month
Month
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Question - Not Required -
Date of Death, if applicable
Month
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Day
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*
Question - Required -
Birthplace (City, State, Country)
*
Question - Required -
Gender
Male
Female
*
Question - Required -
Ethnicity
Black/African-American
Asian
White/Non-Hispanic
Hispanic/Latino
Native American
Pacific Islander
*
Question - Required -
Address
Question - Not Required -
Apartment #
*
Question - Required -
City
*
Question - Required -
State
*
Question - Required -
Postal Code
*
Question - Required -
Country
Question - Not Required -
Home Phone
Question - Not Required -
FAX
Question - Not Required -
Mom's Work Phone
Question - Not Required -
Mom's Cell Phone
Question - Not Required -
Dad's Work Phone
Question - Not Required -
Dad's Cell Phone
Question - Not Required -
Alternate Phone
*
Question - Required -
Email Address
Parent/Guardian Information
Mother
Question - Not Required -
Biological Mother's Full Name
Question - Not Required -
Date of Birth
Month
Month
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
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Dec
Day
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1924
Question - Not Required -
Date of Death, if applicable
Month
Month
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
Day
Day
1
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Question - Not Required -
Birthplace (City, State, Country)
Father
Question - Not Required -
Biological Father's Full Name
Question - Not Required -
Date of Birth
Month
Month
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Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
Day
Day
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1924
Question - Not Required -
Date of Death, if applicable
Month
Month
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
Day
Day
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2021
2020
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2018
2017
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2015
2014
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Question - Not Required -
Birthplace (City, State, Country)
Guardian
Question - Not Required -
Name of Legal Guardian (first, middle, last)
Question - Not Required -
Relationship to Patient
Biological Parent
Family Member
Adoptive Parent
Foster Parent
Grandparent
Alternate
Question - Not Required -
Alternate Contact Name
Question - Not Required -
Relationship to Patient
Question - Not Required -
Telephone Number
Language
Question - Not Required -
Primary Language Spoken in the Household
Diagnosis and Tests
*
Question - Required -
Has your child's HPE diagnosis been confirmed by a brain scan?
Unsure
No
Yes
Question - Not Required -
If Yes, check all types of scans your child has had:
*
Question - Required -
What type of HPE does your child have?
Alobar
Semilobar
Lobar
Middle Interhemispheric Variant (MIH)
Unsure
*
Question - Required -
When was your child diagnosed with HPE?
During pregnancy
Within the first month after birth
Before the age of 1 year
After the age of 1 year
Unsure
*
Question - Required -
Has your child had chromosomal testing?
Unsure
No
Yes
Question - Not Required -
If Yes, what were the results?
Normal results
Waiting for results
Abnormal results
Question - Not Required -
If results were Abnormal, please describe:
(Maximum response 255 chars, approx. 5 rows of text)
*
Question - Required -
Has your child had a gene test for HPE?
Unsure
No
Yes
Question - Not Required -
If Yes, what were the results?
Normal results
Waiting for results
Abnormal results
Question - Not Required -
If the results were abnormal, what were the results?
SHH
ZIC2
SIX3
TGIF
Medical Problems
*
Question - Required -
Does your child have any deformities of the face or head? (select all that apply)
Question - Not Required -
If applicable, list any nose, teeth, eye, ear, facial or other deformities.
(Maximum response 255 chars, approx. 5 rows of text)
*
Question - Required -
Does your child have hydrocephalus (extra water in the brain)?
Unsure
No
Yes
Question - Not Required -
If Yes, does your child have a Shunt?
No
Yes
*
Question - Required -
Has your child ever had convulsions/seizures/epilepsy?
Unsure
No
Occasionally (fewer than 3 in his/her lifetime)
Some (more than 3 seizures in his/her lifetime)
Often (difficult to control)
if Often, about how many seizures does your child have per:
Question - Not Required -
Day
Question - Not Required -
Week
Question - Not Required -
Month
Question - Not Required -
Approximate date of last seizure
Month
Month
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
Day
Day
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Year
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*
Question - Required -
Has your child taken or is your child currently taking medication to control seizures?
No, never has taken medication for seizures.
Yes, took medicine in the past, but not now.
Yes, is currently taking medication for seizures
Question - Not Required -
If Yes, please list name of previous or current medicine(s)
(Maximum response 255 chars, approx. 5 rows of text)
Question - Not Required -
Please describe any other treatment for seizures
Vagal Nerve Stimulator (VNS)
Ketogenic Diet
*
Question - Required -
Has your child been diagnosed with Diabetes Insipidus?
Unsure
No
Yes
Question - Not Required -
If Yes, how are you managing it?
*
Question - Required -
Has your child been diagnosed with Growth Hormone Deficiency?
Unsure
No
Yes
Question - Not Required -
If Yes, how are you managing the deficiency?
No medication needed
Receives hormone replacement medication
*
Question - Required -
Has your child been diagnosed with Cortisol Hormone Deficiency?
Unsure
No
Yes
Question - Not Required -
If Yes, how are you managing the Cortisol Hormone Deficiency?
No medication needed
Receives hormone replacement medication
*
Question - Required -
Has your child been diagnosed with thyroid problems?
Unsure
No
Yes
Question - Not Required -
If Yes, how are you managing the problem?
No medication needed
Receives hormone replacement medication
*
Question - Required -
Does your child have feeding problems?
No
Some difficulty swallowing or chewing
Has feeding tube
*
Question - Required -
Does your child have sleeping problems?
No
Yes
Question - Not Required -
If Yes, how are you managing these problems?
Occasional problems, but no medication needed.
Medication required - responds well.
Severe sleep problems, but medicine does not help.
Development
*
Question - Required -
When was your child born?
Full term (at least 37 weeks gestation)
Premature (less than 37 weeks gestation)
*
Question - Required -
What is your child's current age (weeks/months/years)
Question - Not Required -
If Premature, about haw many weeks early?
*
Question - Required -
Does your child have developmental delays?
No
Yes
*
Question - Required -
What can your child do? (check all that apply)
*
Question - Required -
How does your child reach for or handle objects? (check all that apply)
*
Question - Required -
Does your child speak? (check all that apply)
*
Question - Required -
Does your child have motor problems (check all that apply)
*
Question - Required -
Does your child receive treatment for motor problems?
No
Yes
Question - Not Required -
If Yes, check all types of treatment your child has received and list any medications.
Question - Not Required -
List Medications
Question - Not Required -
Please list any additional diagnoses of syndromes/medical conditions/malformations
(Maximum response 255 chars, approx. 5 rows of text)
Family History
*
Question - Required -
Does anyone else in your family have developmental delays, facial abnormalities (cleft lip/palate, close-set eyes, single front tooth), endocrine (hormone) problems, chromosomal abnormalities, gene mutations, frequent miscarriages, etc.?
No
Yes
Question - Not Required -
If Yes, please include relationship to child and medical condition.
(Maximum response 255 chars, approx. 5 rows of text)
Question - Not Required -
Additional Information or concerns you would like to share?
(Maximum response 255 chars, approx. 5 rows of text)