PATIENT REGISTRY INFORMATION

The AMDA maintains a patient registry to help determine the number of people affected by the disease and to provide the medical and scientific community with access to the patient population for treatment of Acid Maltase Deficiency.

AMDA is not affiliated with any one medical group or organization. Equal access to the patient list for treatment of AMD will be available to the scientific and medical community.

However, no information will be released without prior consent of the patient or the legal guardian of the patient.

Following is the patient registration form. Please fill out the form and email, fax, or mail to AMDA at the following address:

AMDA
Acid Maltase Deficiency Association
P.O. Box 700248
San Antonio, Texas 78270-0248
Phone: 210-494-6144 
Fax: 210-490-7161 
E-mail: tianrama@aol.com

Patient Registry Form

Patient Information:

Name: Male Female

Address:

City: State: Zip: Country:

Phone:

Fax:

E-Mail:

Date of Birth (M/D/Y): Current Age:

Disease Onset: Age Diagnosed:

Ethnic Background (optional):
(This may be helpful in determining ethnic predilection to the disease)

Physician who made diagnosis:

Date of diagnosis:

Where diagnosed:

City/State/Zip:

Country:

Do you have medical insurance (U.S. patients): yes no

Current Primary Care Physician:

Name:

Phone: Fax:

Physician Address:

City/State/Zip:

Country:

Minor Patient Information:

Parents/Guardians:

Address:

City: State: Zip: Country:

Phone: Fax: Email:

All information on this form will remain confidential!
No information will be released without written permission from patient, or
parent or legal guardian of patient.

 

To contact the AMDA

 

AMDA Home Page

© AMDA, Acid Maltase Deficiency Association, Inc. 1997