Patient Registration

This registration form is in 3 parts and will take approximately 15 minutes to complete. Your responses will be very helpful for our analysis of the variable progression of this disease and several other features specific to LGMD2C. Please consider filling out the form in its entirety even though some of the questions are optional. This website is secure. ALL INFORMATION WILL BE KEPT CONFIDENTIAL. If you do not wish to register on our website, we still want to hear from you. Please contact Kent Frewing at kfrewing@gmail.com.


LIMB-GIRDLE MUSCULAR DYSTROPHY (LGMD2C OR GAMMA SARCOGLYCANOPATHY) PATIENT REGISTRY

KURT+PETER FOUNDATION
P. O. BOX 691
MENLO PARK, CA 94026
www.kurtpeterfoundation.org
PHONE: 818-207-4479
EMAIL: kent@kurtpeterfoundation.org

Click here for legal information regarding this form.


Basic Information

First Name*:
Last Name*:
Email*:
Street Address:
 
City/State/Postal Code*:
Country*:
Phone:
Gender*:
Current Age*:
Age at Diagnosis:

Was your diagnosis made and/or confirmed by:
Physical examination:
CK (creatine kinase) level:
If you know it, what was your CK level at diagnosis:
Test for gamma sarcoglycan protein level by muscle biopsy:
Test for gamma sarcoglycan protein level by blood cell (monocyte) test:
Mutational analysis (DNA sequencing):

Family background:

Do either of your parents have the disease?
Mother: Father:

Do you have any siblings from the same two parents?
Name Age Also affected with LGMD2C
Do you have any children?
Name Age Also affected with LGMD2C
Do any of your other relatives / ancestors have the disease?
Name Age Also affected with LGMD2C

Information on symptoms:

Age when you first noticed symptoms:

Do you use any of the following aids?
Wheelchairs/motorized scooter: If so, at what age did you start:
Cane: If so, at what age did you start:
Leg Braces: If so, at what age did you start:

How far can you walk without assistance:
How long can you stand without any support:

Do you have trouble with the following?
Standing on tiptoes: If so, at what age did it start:
Rising from a sitting position: If so, at what age did it start:
Is there any method that improves this (e.g. pushing yourself up)? Please explain:
Sitting up from a horizontal position (e.g. from lying on a bed): If so, at what age did it start:
Climbing stairs without any aids or railing: If so, at what age did it start:
Can you climb stairs with aids (e.g. railing or cane)? Please explain:
Walking on a slight elevation (like a ramp): If so, at what age did it start:
Raising your arms above your head: If so, at what age did it start:
Picking up a glass of water: If so, at what age did it start:
Opening a jar: If so, at what age did it start:
Do you have any cardiac or respiratory difficulties? Please explain:
Have you noticed any factors (e.g. exercise patterns, diet, alcohol) that exacerbate or ameliorate your symptoms? Please explain:
Did you frequently participate in sports or other physical activity before your symptoms appeared? Please explain:
Do you have any additional autoimmune or neurological conditions or diabetes? Please explain:
Are you being treated with steroids? If so, which steroid and at what dose and frequency:

Pete

Pete has never met a truck he did not like.

Kurt

Kurt zooms around the block on his balance bike.