Kleefstra Syndrome Patients – Basic Contact Form

/Kleefstra Syndrome Patients – Basic Contact Form
Kleefstra Syndrome Patients – Basic Contact Form2018-08-21T23:09:17+00:00

If you are part of a family affected by Kleefstra syndrome, please complete the three brief sections of the basic contact form below and your information will be added to K.I.D.S. IQ Project’s patient database. This information is extremely critical in terms of advancing the development of potential drugs for Kleefstra syndrome, serving as a resource for better understanding patient population size/dynamics in addition to providing an efficient way to recruit patients into research studies. Details related to the use of patient information can be found in our Privacy Policy and Legal Terms & Conditions. By submitting any information on the form below, you acknowledge that you are authorized to share such information and provide the requested consents.

1. KLEEFSTRA SYNDROME PATIENT INFORMATION

First Name (KS Patient)

Last Name (KS Patient)

Gender
MaleFemale

Birth Date (mm/dd/yyyy)

Year of Diagnosis (approximate if precise year not recalled)

Type of Mutation (please select)

Size of Deletion (e.g. 0.466 Mb) (if applicable and known)

Has the KS Patient Ever Had a Seizure? Provide Age of First Seizure and Type of Seizure (if applicable and known)

Describe any Heart Abnormalities (if applicable)

Has the KS Patient Ever Been Formally Diagnosed (Either by a Specialist or Medical Professional) with Autism Spectrum Disorder? Provide any Additional Relevant Details

Hospital Where Kleefstra Syndrome Was Diagnosed

List Other Family Members with Kleefstra Syndrome (if applicable)

Recent Photo

2. PERSON COMPLETING THIS FORM

First Name (Person Completing This Form)

Last Name (Person Completing This Form)

Your Relation to Kleefstra Syndrome Patient

Email (primary)

Email (secondary or spouse/other family member)

Phone

Address

City

State or Province

ZIP or Postal Code

Country

Primary Language(s) (list all including English, if applicable)

3. LEGAL DECLARATIONS AND CONSENTS

I Am Authorized To Share The Patient Information Provided On This Form and Provide The Required Consents In This Section (must be "Yes" to proceed)

Would You Like To Share Any of the Above Identifiable Information with Other Parents? (select your preference)

Permission To Use Patient's Pictures on K.I.D.S. IQ Project's Website (select your preference)

Permission To Share and Release Coded Personal Health Information (No Direct Identifiers) on K.I.D.S. IQ Project, and with Researchers, Entities Affiliated with K.I.D.S. IQ Project or Acting on Behalf of/with K.I.D.S. IQ Project and Relevant Third Parties such as K.I.D.S. IQ Project Program Participants and Grant Providers (must be "Yes" to proceed)

I Acknowledge That I Have Read, Understood and Agree To K.I.D.S. IQ Project's Legal Terms & Conditions and Privacy Policy Provided on This Website, which Includes Information Related To (But Not Limited To) The Collection, Storage and Use of The Information Provided By You Above (must be "Yes" to proceed)