Study: NCT03025763

Intervention type: OTHER
Intervention: Craniosynostosis Network Environmental Survey
Description: Questionnaire is administered to the mothers of affected participants regarding medical history and environmental exposures during pregnancy, delivery, and neonatal period. Optional.

Intervention type: OTHER
Intervention: Craniosynostosis Network Environmental Survey
Description: Questionnaire is administered to the mothers of affected participants regarding medical history and environmental exposures during pregnancy, delivery, and neonatal period. Optional.

Intervention type: OTHER
Intervention: Craniosynostosis Network Environmental Survey
Description: Questionnaire is administered to the mothers of affected participants regarding medical history and environmental exposures during pregnancy, delivery, and neonatal period. Optional.

Intervention type: OTHER
Intervention: 2D/3D Photography
Description: Full frontal and lateral face and other parts of the body may be taken for dysmorphic assessment. There is the risk of identification and loss of confidentiality. Optional.

Intervention type: OTHER
Intervention: 2D/3D Photography
Description: Full frontal and lateral face and other parts of the body may be taken for dysmorphic assessment. There is the risk of identification and loss of confidentiality. Optional.

Intervention type: OTHER
Intervention: 2D/3D Photography
Description: Full frontal and lateral face and other parts of the body may be taken for dysmorphic assessment. There is the risk of identification and loss of confidentiality. Optional.

Intervention type: PROCEDURE
Intervention: Buccal Swab Cell Sampling
Description: One or more swabs, like a Q-tip (for children), or saliva collection kit (for adults) will be used to collect buccal cells. With a swab, they will brush the inside of the mouth several times. With saliva collection kit, they will collect their saliva by spitting into a container several times using a commercially available saliva collection kit. Required.

Intervention type: PROCEDURE
Intervention: Buccal Swab Cell Sampling
Description: One or more swabs, like a Q-tip (for children), or saliva collection kit (for adults) will be used to collect buccal cells. With a swab, they will brush the inside of the mouth several times. With saliva collection kit, they will collect their saliva by spitting into a container several times using a commercially available saliva collection kit. Required.

Intervention type: PROCEDURE
Intervention: Buccal Swab Cell Sampling
Description: One or more swabs, like a Q-tip (for children), or saliva collection kit (for adults) will be used to collect buccal cells. With a swab, they will brush the inside of the mouth several times. With saliva collection kit, they will collect their saliva by spitting into a container several times using a commercially available saliva collection kit. Required.

Intervention type: PROCEDURE
Intervention: Blood sampling
Description: Venipuncture so that one teaspoon to tablespoons (1-20 ml.) of blood is collected. The volume drawn will be dependent on the age and size of the child. Minimal amounts may be required for DNA, but to establish a lymphoblastoid or iPS cell line at least 3 to 10 ml will be required independent of age. In the case of an infant, if 3 to 10 ml cannot be obtained, then a lymphoblastoid or iPS cell line will not be created. Optional.

Intervention type: PROCEDURE
Intervention: Blood sampling
Description: Venipuncture so that one teaspoon to tablespoons (1-20 ml.) of blood is collected. The volume drawn will be dependent on the age and size of the child. Minimal amounts may be required for DNA, but to establish a lymphoblastoid or iPS cell line at least 3 to 10 ml will be required independent of age. In the case of an infant, if 3 to 10 ml cannot be obtained, then a lymphoblastoid or iPS cell line will not be created. Optional.

Intervention type: PROCEDURE
Intervention: Blood sampling
Description: Venipuncture so that one teaspoon to tablespoons (1-20 ml.) of blood is collected. The volume drawn will be dependent on the age and size of the child. Minimal amounts may be required for DNA, but to establish a lymphoblastoid or iPS cell line at least 3 to 10 ml will be required independent of age. In the case of an infant, if 3 to 10 ml cannot be obtained, then a lymphoblastoid or iPS cell line will not be created. Optional.

Intervention type: PROCEDURE
Intervention: Skin Biopsy
Description: For those who do not undergo surgery or the skin removal is not considered part of the surgical procedure. After proper cleaning, a piece of skin the size of a pencil eraser (about 4 mm or 1/8 inch in diameter) will be removed (using a circular blade or scalpel) from the arm (inside of arm or forearm in a spot that is as unnoticeable as possible). This area will be covered with a Band-Aid. No stitches are usually required. A crust will form and eventually fall off. Optional.

Intervention type: PROCEDURE
Intervention: Skin Biopsy
Description: For those who do not undergo surgery or the skin removal is not considered part of the surgical procedure. After proper cleaning, a piece of skin the size of a pencil eraser (about 4 mm or 1/8 inch in diameter) will be removed (using a circular blade or scalpel) from the arm (inside of arm or forearm in a spot that is as unnoticeable as possible). This area will be covered with a Band-Aid. No stitches are usually required. A crust will form and eventually fall off. Optional.

Intervention type: PROCEDURE
Intervention: Skin Biopsy
Description: For those who do not undergo surgery or the skin removal is not considered part of the surgical procedure. After proper cleaning, a piece of skin the size of a pencil eraser (about 4 mm or 1/8 inch in diameter) will be removed (using a circular blade or scalpel) from the arm (inside of arm or forearm in a spot that is as unnoticeable as possible). This area will be covered with a Band-Aid. No stitches are usually required. A crust will form and eventually fall off. Optional.

Intervention type: PROCEDURE
Intervention: Tissues from a Clinically Indicated Procedure
Description: In some instances when there is discarded tissues and specimens (including skin and bone at the time of reconstructive craniofacial surgery), they will be collected by making arrangements with their physicians. Some of these tissues will be used to generate cell lines. Optional.

Intervention type: PROCEDURE
Intervention: Tissues from a Clinically Indicated Procedure
Description: In some instances when there is discarded tissues and specimens (including skin and bone at the time of reconstructive craniofacial surgery), they will be collected by making arrangements with their physicians. Some of these tissues will be used to generate cell lines. Optional.

Intervention type: PROCEDURE
Intervention: Tissues from a Clinically Indicated Procedure
Description: In some instances when there is discarded tissues and specimens (including skin and bone at the time of reconstructive craniofacial surgery), they will be collected by making arrangements with their physicians. Some of these tissues will be used to generate cell lines. Optional.

Intervention type: PROCEDURE
Intervention: Pre-operative CT Scan Image Files.
Description: Optional for those who had a previous CT scan for a prior traumatic event.

Intervention type: PROCEDURE
Intervention: Pre-operative CT Scan Image Files.
Description: Optional for those who had a previous CT scan for a prior traumatic event.

Intervention type: PROCEDURE
Intervention: Pre-operative CT Scan Image Files.
Description: Optional for those who had a previous CT scan for a prior traumatic event.