First Name
* must provide value
Last Name
* must provide value
Email
* must provide value
Phone Number
* must provide value
Mailing Address (## St, Town, State Zipcode)
* must provide value
Study of InterestPlease only select a study if you or your family member has received an official diagnosis.
* must provide value
We are not currently recruiting for Arachnoid Cyst (AC), Pseudotumor Cerebri (PTC/ IIH), or Moebius Syndrome (MBS) projects.
How many individuals (both affected and unaffected ) in your family will participate in this study?
" Affected " means has disorder of interest
All participants must provide a swab sample, sign a consent form and fill out a patient information survey. If participant is too young or unable to sign consent form and fill out survey, parent/guardian can complete on their behalf.
* must provide value
1 2 3 4 5 6 7 8 9 Other
How many individuals (both affected and unaffected ) in your family will participate in this study?
* must provide value
Fill out the following for each person in your family.First Name: Last Name: Date of Birth: Is this person affected with the disorder: What is this person's relationship to the youngest affected person in the family: What address should we send this person's forms and/or DNA swab package to: Would this person prefer to use a physical form or an electronic form for the patient information survey: Email to send electronic form:
* must provide value
Has the affected participant(s) had brain surgery for their Chiari Malformation?
* must provide value
Yes
No
Explain surgical history, if necessary for multiple affected participants
Did the affected participant(s) develop Hydrocephalus before adulthood?
* must provide value
Yes
No
Did the affected participant(s) develop Hydrocephalus in adulthood?
* must provide value
Yes
No
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with ______ ?
* must provide value
Yes
No
If multiple studies of interest have been selected but this individual is affected with only one of the selected studies, please explain here.
* must provide value
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
First Name
* must provide value
Last Name
* must provide value
Date of Birth
* must provide value
Today M-D-Y
Does this person have the capacity to provide saliva for a DNA sample kit?To collect DNA samples from participants, we utilize a process that collects saliva in a small tube (a spit kit). While the saliva tube is our preferred method of collection, participants of a young age (3 and under) or those with neurodevelopmental issues that make it challenging to produce/ collect saliva have the option to use cheek swab kits.
* must provide value
Yes, they can use the saliva collection kit
No, they will need to use the cheek swab kit
Is this person affected with the disorder?
* must provide value
Affected
Unaffected
What is this person's relationship to the youngest affected person in the family?
Eg. If this person is the Mother of the youngest affected person select "Mother".
* must provide value
youngest affected person mother father sister brother cousin daughter son aunt uncle niece nephew granddaughter grandson grandmother grandfather great grandmother great grandfather great granddaughter great grandson identical twin sister identical twin brother non-identical twin sister non-identical twin brother half sister half brother wife husband step father step mother
What address should we send this person's forms and/or DNA swab package to? (there needs to be one package per participant) Eg. 333 Cedar St, New Haven, CT 06510 (all packages can be sent to one address or to multiple)
* must provide value
Would this person prefer to use a physical form or an electronic form for the patient information survey?
Physical form would be sent via mail.
Electronic form would be sent via email. (All forms can be sent to the same email, if preferred)
* must provide value
Physical Form
Electronic Form
Email to send electronic form.
* must provide value
