AHC Patient Registry

You are asked to enroll in the AHC Registry so that we may quickly and efficiently contact you in the future with information about new treatments for AHC, or about studies for which you may be eligible. Additionally, we are asking you to enroll so that we have a better understanding of how many people are affected with AHC.
The primary benefit to you is that you will be contacted as soon as we launch any AHC research study in which you may be eligible to participate, or as soon as we find a new treatment for AHC. The secondary benefit is that you will know that you are accounted for in AHC Registry, which is our way of counting how many people have AHC. Knowing how many people have the disease is an important piece of information for obtaining funding of studies on AHC. Risks include the very small risk of loss of confidentiality that results from any activity involved in disclosing personal information.

Today/s date: / /

Name of person completing form:
First:
Last:

Relationship to Patient: Self Legal Guardian Other

Patient Information

Patient/s Name:
First:
Last:

Patient/s date of birth: / /

Gender: Male Female

Race:

White	Black or African American
Asian	Hispanic or Latino
American Indian or Alaska Native
Other

Patient/s Address:

Street

City State

Postal Code Country

Patient/s phone

Patient/s Cell phone

Patient/s Primary email:

Patient/s Secondary email:

Mother/s Information

Mother/s Name:
First:
Maiden:

Mother/s date of birth: / /

Mother/s Address:

Street

City State

Postal Code Country

Mother/s phone

Mother/s Cell phone

Mother/s Work phone

Mother/s Primary email:

Mother/s Secondary email:

Father/s Information

Father/s Name:
First:
Last:

Father/s date of birth: / /

Father/s Address:

Street

City State

Postal Code Country

Father/s phone

Father/s Cell phone

Mother/s Work phone

Father/s Primary email:

Father/s Secondary email:

Legal Guardian/s Information (If other than parent or patient)

Legal Guardian/s Name:
First:
Last:

Legal Guardian/s date of birth: / /

Guardian/s Address:

Street

City State

Postal Code Country

Guardian/s phone

Guardian/s Cell phone

Guardian/s Work phone

Guardian/s Primary email:

Guardian/s Secondary email:

Doctor/s Information

Doctor/s Name:
First:
Last:

Doctor/s specialty:
First:

Doctor/s phone

Doctor/s Address:

Street

City State

Postal Code Country

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