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5kSMhxNwFtvF9QjndN4KgfRJyLfgLjhoj5MrRVGUmGVSLUByCX2vmSjS8mkn96XLEePuVNvRaUfbAXmBVRTqREPfZZoekJU7M5CFy2GiB7EHC5b

CNL Research Participation Interest Form

Thank you for your interest in our research! You can read more about our work by visiting our website, or contacting us at cnl@einsteinmed.edu.

Please answer the questions below to be contacted regarding research study participation!

Today's date:

M-D-Y

Manual Entry of Recruitment Fair Contact

Yes

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Name of Recruitment Fair:

Date of Recruitment Fair:

M-D-Y

Contact Name:

Contact Phone Number:

Contact Email Address:

Relationship to Potential Participant:

Self

Parent/Guardian

Other

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Please Explain:

Participant Age:

Participant Diagnosis:

Notes or Additional Information:

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I am completing this form for:

* must provide value

Full Name of Parent or Legal Guardian:

Contact Phone Number:

Contact E-mail Address:

Current Mailing Address:

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What is the best way of contacting you?

Call

Text

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How did you hear about us? Check all that apply.

Doctor or Other Provider Referral

Resource Fair or Other In-Person Event

Social Media Advertisement or Posting

Email List-Serv

Fliers or Brochures

Newspaper Advertisement

Bus Shelter Advertisement

Google Search

Friend or Family Member

Other (please specify)

Other:

Full Name:

Last Name

Date of Birth:

M-D-Y

Age

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Racial Background:

American Indian/Alaska Native

Asian

Native Hawaiian or Other Pacific Islander

Black or African American

White

Other

Please use this space to input your racial background:

Ethnicity:

Hispanic or Latino

NOT Hispanic or Latino

Unknown / Not reported

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Biological Sex:

Male

Female

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Preferred Pronouns:

He/Him

She/Her

They/Them

Other

Please use this space to input your preferred pronouns:

Does your current gender identification match the sex you were assigned at birth?

Yes

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Please explain

Have you been diagnosed with any of the following? (please select all that apply)

Autism

ADHD

Sensory Processing disorder

22Q Deletion Syndrome

Cystinosis

Multiple Sclerosis

Rett Syndrome

Schnizophrenia

Other

No Diagnosis

Suspected Autism Diagnosis (not currently diagnosed)

Please list other diagnosis:

Does anyone in your immediate family (siblings, parents, children) have any of the following Diagnoses?

Autism

ADHD

Sensory Processing disorder

22Q Deletion Syndrome

Cystinosis

Multiple Sclerosis

Rett Syndrome

Schizophrenia

Other

No Diagnoses

Suspected Autism Diagnosis (not currently diagnosed)

Please list other diagnosis:

Are you currently taking any medications?

Yes

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Please list your current medication(s) and dosage(s):

Were you carried to full term, or born prematurely (born less than 37 weeks)?

Full-term pregnancy

Premature birth (less than 37 weeks)

Unknown

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Please specify your gestational age (at how many weeks were you born?):

Do you have a history of seizures?

Yes

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Do you have vision problems?

Yes

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Please explain vision problems:

Do you have hearing problems?

Yes

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Please explain hearing problems:

Child's Full Name:

Child's last name

Child's Date of Birth:

* must provide value

M-D-Y

Child's Age

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Child's Racial Background:

American Indian/Alaska Native

Asian

Native Hawaiian or Other Pacific Islander

Black or African American

White

Other

Please indicate child's racial background:

Child's Ethnicity:

Hispanic or Latino

NOT Hispanic or Latino

Unknown / Not Reported

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Child's Biological Sex:

Male

Female

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Child's Preferred Pronouns:

He/Him

She/Her

They/Them

Other

Please indicate child's preferred pronouns:

Does your child's current gender identity match their sex assigned at birth?

Yes

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Please explain

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Has your child been diagnosed with any of the following? (please select all that apply)

Autism

ADHD

Sensory Processing disorder

PDDNOS

22Q Deletion Syndrome

Cystinosis

Rett Syndrome

Schizophrenia

Other

No Diagnosis

Suspected Autism Diagnosis (not currently diagnosed)

Please list child's other diagnosis:

Does anyone in your child's immediate family (siblings, parents, children) have any of the following diagnoses?

Autism

ADHD

Sensory Processing disorder

22Q Deletion Syndrome

Cystinosis

Multiple Sclerosis

Rett Syndrome

Schizophrenia

Other

No Diagnoses

Please list other diagnosis:

Is your child currently taking any medication?

Yes

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Please list your child's medication(s) and dosage(s):

Was your child carried to full term, or born prematurely?

Full-term pregnancy

Premature birth

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At approximately how many weeks was your child born (full term is considered to be 37-42 weeks)?

Has your child ever completed genetic testing?

Yes

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Has your child ever been diagnosed with any of the following genetic conditions? (please select all that apply)

PTEN mutation

Fragile X syndrome

ADNP Syndrome

SHANK3 Mutation

Tuberous Sclerosis

Other

No Genetic Diagnosis

Please list other genetic conditions and/or findings:

Does your child have hearing problems?

Yes

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Please explain hearing problems:

Does your child have a history of seizures?

Yes

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Does your child have vision problems?

Yes

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Please explain vision problems:

Does your child receive any interventions, outside of the school setting?

Yes

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What kind of intervention is your child receiving? (please select all that apply)

ABA

Sensory Integration Therapy

Speech

Physical Therapy

Social Group

Other

Other therapy:

Approximately how many hours of ABA is your child receiving each week, outside the school setting?

Approximately how many hours of Sensory Integration therapy is your child receiving each week, outside the school setting?

Approximately how many hours of Speech therapy is your child receiving each week, outside the school setting?

Approximately how many hours of Physical therapy is your child receiving each week, outside the school setting?

Approximately how many hours of Social group is your child attending each week, outside the school setting?

Is there anything else you would like research staff to know?

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By clicking here, you attest that all information you provided in this form is accurate to the best of your knowledge

* must provide value

I agree

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Please click the link below for a PDF of Einstein's IRB letter of approval for the Human Clinical Phenotyping Core (HCP)

Attachment:HCP_Approval_Letter_2022.pdf

Please click the link below for a PDF of the HCP consent form

Attachment:HCP_Parental_Permission_Consent_Form__2022.pdf

Please click the link below for a PDF of the HCP consent form

Attachment:HCP_Off_Site_Individual_Consent_Form_2022.pdf

I consent to the researchers reviewing my medical records for purposes of this research registry, and to determine eligibility for future studies (optional)

* must provide value

I consent

I DO NOT consent

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Provider Name:

Provider Email:

Provider Affiliation(s):

Montefiore Healthy Steps or Behavioral Health Integration Program (BHIP)

Montefiore Children's Evaluation and Rehabilitation Center (CERC)

Montefiore RETT Syndrome Center

Montefiore-Einstein Regional Center for 22q Deletion Syndrome

Montefiore School Health Program

Other Program or Center at Montefiore Medical Center

Jacobi Medical Center

Other (please specify)

Montefiore Primary Care

Please list other affiliation(s):

How did you hear about us?

Presentation from Study Team at the CNL

Colleague(s) and/or Other Provider(s)

Resource Fair or Other In-Person Event

Social Media Advertisement or Posting

Email List-Serv

Fliers or Brochures

Newspaper Advertisement

Bus Shelter Advertisement

Google Search

Friend(s) or Family Member(s)

Other (please specify)

Please specify:

By clicking here, you affirm that you have obtained verbal or written permission from your patient (if 18+ years old) or their parent/legal guardian (if < 18 years old) to share their contact information with the study team so they can be contacted about study participation.

* must provide value

We are currently accepting referrals for several research studies at the CNL (both clinical and control participants). Please use the links below to learn more about these projects and determine if your patient may qualify to participate.

Autism Genetics & Human Diversity (ages 3+); Click here to visit study website
Brain Function & Communication in Autism (ages 8-12); Click here to visit study website
Predictive Processing in Autism (ages 17-29); Click here to view our brochure
Cognitive Function in Cystinosis & CKD; Click here to view our fliers

Which study did you discuss with your patient?

Autism Genetics & Human Diversity (ages 3+)

Brain Function & Communication in Autism (ages 8-12)

When did you discuss study participation with this patient?

M-D-Y

Patient Name:

Patient date of birth:

M-D-Y

Diagnostic Status:

Patient has Autism Spectrum Disorder

Patient is suspected of having Autism Spectrum Disorder

Patient has a sibling with Autism Spectrum Disorder

Patient has no confirmed or suspected diagnoses

Other

Specify other diagnostic category:

Parent or Guardian Name (if patient under 18 years old):

Preferred Phone Number:

Preferred E-mail Address:

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.