CCF - MEMBER REGISTRATION

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Personal Details

* Required Information

Prefix

First Name

Last Name

Member Type

I am the parent/guardian of a diagnosed or at-risk child with cardiomyopathy.

I was diagnosed as a child (under 18 years) with cardiomyopathy.

I am a friend/relative of a diagnosed or at-risk child with cardiomyopathy.

I have a professional interest in cardiomyopathy.

Address

Organization/Practice (If applicable)

Country

Street Address 1

Street Address 2

City

State/Province

Postal Code

Contact Information

Email (confirmation)

Phone

Phone Type

Mobile LandLine

Family History

Do you have a family history of cardiomyopathy?

Yes No

If Yes, who is affected?

Father
Mother
Brother
Sister
Grandparent
Other relative

Number of diagnosed children

Additional Information

How did you hear about CCF?

Comments:

Child 1 Medical Information

First Name

Last Name

Date of Birth

Sex

Male Female Intersex

Type of Cardiomyopathy

Dilated cardiomyopathy (DCM)

Hypertrophic cardiomyopathy (HCM)

Hypertrophic cardiomyopathy with obstruction (HOCM)

Restrictive cardiomyopathy (RCM)

Non-compaction cardiomyopathy (NCCM)

Arrhythmogenic cardiomyopathy (ACM)

Diagnosis

Age at diagnosis (years)

Age at diagnosis (months)

Status

Living Deceased

If deceased, age at death:

Has your child ever experienced a sudden cardiac arrest?

Yes No

If yes, was your child diagnosed with cardiomyopathy before or after the cardiac arrest?

Before After

Was a diagnosis of cardiomyopathy made after death?

Yes No

Treatment Plan

Where does your child receive care?

Did your child undergo genetic testing?

Yes No

If yes, what genetic mutation was identified?

Is your child’s cardiomyopathy related to another disease or disorder?

Yes No

What is the other diagnosed disorder?

What surgical treatments applies to your child’s treatment?

Myectomy

Implantable Cardioverter Defibrillator (ICD)

Ventricular Assist Device (VAD)

Heart Transplant

Additional Comments