THE CARTER CENTERS FOR BRAIN RESEARCH IN HOLOPROSENCEPHALY AND RELATED MALFORMATIONS

The Carter Centers have established the International HPE Registry as a way to create a comprehensive list of patients diagnosed with holoprosencephaly not only in the United States but also worldwide. Holoprosencephaly (HPE) is a medical condition that is not well understood. The International HPE Registry provides research scientists with a more accurate understanding of the number of HPE cases diagnosed and serves as a vehicle to collect clinical information to share with other researchers. It also provides a means for families to contact other families and allows families to receive information regarding potential research initiatives in which they may want to participate.

Even if you have lost a child diagnosed with HPE, you may still register your child. Please complete the form according to what your child was able to accomplish and his/her limitations. We appreciate information on every child with HPE.

International HPE Registration

 

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.

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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.

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Question - Required - I give my permission for the following information to be shared with other researchers: (Please choose only one)



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Question - Required - Today's Date




   


 

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

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Question - Required - Date of Birth




 
Question - Not Required - Date of Death, if applicable




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Question - Required - Gender


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Question - Required - Ethnicity






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Parent/Guardian Information

 

Mother

   


 
Question - Not Required - Date of Birth




 
Question - Not Required - Date of Death, if applicable




   


 

Father

   


 
Question - Not Required - Date of Birth




 
Question - Not Required - Date of Death, if applicable




   


 

Guardian

   


 
Question - Not Required - Relationship to Patient





 

Alternate

   


   


   


 

Language

   


 

Diagnosis and Tests

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Question - Required - Has your child's HPE diagnosis been confirmed by a brain scan?



 
Question - Not Required - If Yes, check all types of scans your child has had:

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Question - Required - What type of HPE does your child have?





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Question - Required - When was your child diagnosed with HPE?





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Question - Required - Has your child had chromosomal testing?



 
Question - Not Required - If Yes, what were the results?



 

(Maximum response 255 chars, approx. 5 rows of text)

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Question - Required - Has your child had a gene test for HPE?



 
Question - Not Required - If Yes, what were the results?



 
Question - Not Required - If the results were abnormal, what were the results?




 

Medical Problems

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Question - Required - Does your child have any deformities of the face or head? (select all that apply)

 

(Maximum response 255 chars, approx. 5 rows of text)

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Question - Required - Does your child have hydrocephalus (extra water in the brain)?



 
Question - Not Required - If Yes, does your child have a Shunt?


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Question - Required - Has your child ever had convulsions/seizures/epilepsy?





 

if Often, about how many seizures does your child have per:

   


   


   


 
Question - Not Required - Approximate date of last seizure




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Question - Required - Has your child taken or is your child currently taking medication to control seizures?



 

(Maximum response 255 chars, approx. 5 rows of text)

 
Question - Not Required - Please describe any other treatment for seizures


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Question - Required - Has your child been diagnosed with Diabetes Insipidus?



 
Question - Not Required - If Yes, how are you managing it?

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Question - Required - Has your child been diagnosed with Growth Hormone Deficiency?



 
Question - Not Required - If Yes, how are you managing the deficiency?


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Question - Required - Has your child been diagnosed with Cortisol Hormone Deficiency?



 
Question - Not Required - If Yes, how are you managing the Cortisol Hormone Deficiency?


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Question - Required - Has your child been diagnosed with thyroid problems?



 
Question - Not Required - If Yes, how are you managing the problem?


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Question - Required - Does your child have feeding problems?



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Question - Required - Does your child have sleeping problems?


 
Question - Not Required - If Yes, how are you managing these problems?



 

Development

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Question - Required - When was your child born?


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Question - Required - Does your child have developmental delays?


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Question - Required - What can your child do? (check all that apply)

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Question - Required - How does your child reach for or handle objects? (check all that apply)

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Question - Required - Does your child speak? (check all that apply)

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Question - Required - Does your child have motor problems (check all that apply)

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Question - Required - Does your child receive treatment for motor problems?


 
Question - Not Required - If Yes, check all types of treatment your child has received and list any medications.

   


 

(Maximum response 255 chars, approx. 5 rows of text)

 

Family History

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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.?


 

(Maximum response 255 chars, approx. 5 rows of text)

 

(Maximum response 255 chars, approx. 5 rows of text)

   Please leave this field empty