CPRN Enrollments

Total number of patients in the Registry is 4516

Demographics

a- Age groups:

Percentages of Age Groups Distribution per site
Age_Groups ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
0-2 0% 2% 3% 0% 0% 0% 0% 0% 0% 3% 0% 3%
3-5 4% 13% 17% 15% 0% 6% 0% 20% 32% 14% 13% 14%
6-10 16% 33% 32% 67% 46% 29% 33% 27% 52% 26% 32% 29%
11-18 54% 39% 31% 9% 54% 45% 33% 53% 12% 37% 48% 36%
19-25 23% 14% 10% 9% 0% 18% 33% 0% 4% 19% 6% 16%
26-35 2% 0% 6% 0% 0% 2% 0% 0% 0% 0% 0% 2%
36+ 0% 0% 3% 0% 0% 0% 0% 0% 0% 0% 0% 1%
Missing 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

b- Gender

Gender Distribution per site
Gender ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Female 50% 43% 45% 35% 50% 40% 67% 47% 44% 44% 58% 44%
Male 49% 56% 55% 65% 50% 60% 33% 53% 56% 56% 42% 56%
Unknown 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
No info 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Null 1% 1% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

c- Race:

Race Distribution per site
Race ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
American Indian or Alaska Native 0% 1% 0% 0% 0% 3% 0% 0% 0% 0% 0% 0%
Asian 7% 6% 3% 2% 0% 2% 0% 0% 0% 0% 10% 2%
Black or African American 9% 7% 20% 28% 12% 2% 0% 7% 20% 0% 10% 7%
Native Hawaiian or Other Pacific Islander 0% 1% 1% 0% 0% 1% 0% 0% 0% 0% 0% 0%
White 62% 53% 65% 70% 88% 89% 67% 93% 60% 0% 39% 33%
Multiple race 0% 7% 10% 0% 0% 0% 33% 0% 4% 0% 0% 4%
Refuse to answer 1% 7% 1% 0% 0% 1% 0% 0% 0% 0% 0% 2%
Unknown 18% 4% 0% 0% 0% 0% 0% 0% 4% 0% 0% 1%
No information 2% 5% 0% 0% 0% 3% 0% 0% 12% 0% 0% 1%
Other 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 42% 0%
Null 1% 9% 0% 0% 0% 0% 0% 0% 0% 100% 0% 49%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

d- Ethnicity

Ethnicity Distribution per site
Ethnicity ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Not Hispanic or Latino 78% 73% 96% 96% 58% 89% 100% 80% 56% 0% 48% 45%
Hispanic or Latino 11% 20% 3% 4% 4% 10% 0% 7% 8% 0% 52% 5%
Unknown 10% 1% 0% 0% 23% 0% 0% 0% 8% 0% 0% 1%
No info 2% 5% 0% 0% 15% 1% 0% 13% 28% 0% 0% 1%
Other 0% 0% 1% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Null 0% 0% 0% 0% 0% 0% 0% 0% 0% 100% 0% 48%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

CP specific data

a- Etiology:

Etiology Distribution per site
Etiology ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Hypoxic Ischemic Encephalopathy 1% 14% 11% 2% 4% 5% 0% 20% 0% 0% 3% 6%
Prematurity- Intra-Ventricular Hemorrhage 1% 10% 9% 30% 0% 17% 33% 0% 0% 0% 0% 5%
Prematurity- Peri-Ventricular Leukomalacia 0% 5% 16% 17% 12% 7% 33% 40% 8% 0% 0% 6%
Prematurity- White Matter Injury 0% 0% 4% 0% 0% 1% 33% 7% 0% 0% 0% 1%
Prematurity- Multiple Injuries 0% 1% 3% 0% 0% 12% 0% 7% 0% 0% 0% 1%
Congenital Infection 0% 2% 3% 2% 0% 2% 0% 0% 0% 0% 0% 1%
Congenital Stroke 0% 6% 3% 4% 0% 2% 0% 0% 0% 0% 0% 2%
Brain Malformation 1% 10% 7% 2% 0% 5% 0% 7% 0% 0% 0% 4%
Genetic Condition 0% 1% 3% 2% 0% 11% 0% 0% 0% 0% 0% 1%
Other 0% 18% 2% 15% 0% 28% 0% 7% 0% 0% 0% 5%
Unknown 0% 17% 17% 11% 12% 10% 0% 7% 0% 0% 0% 8%
Mixed 0% 12% 4% 9% 0% 2% 0% 7% 0% 0% 39% 3%
Missing 98% 5% 20% 4% 73% 0% 0% 0% 92% 100% 58% 57%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

b- GMFCS:

GMFCS Distribution per site
GMFCS ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Level I 3% 22% 29% 7% 0% 1% 0% 7% 8% 25% 13% 24%
Level II 18% 15% 16% 22% 19% 10% 0% 7% 36% 20% 10% 18%
Level III 16% 11% 9% 28% 19% 8% 0% 20% 24% 13% 16% 12%
Level IV 29% 18% 16% 22% 35% 13% 0% 33% 24% 17% 6% 17%
Level V 33% 32% 18% 11% 19% 57% 0% 33% 8% 21% 19% 24%
Not Assessed 0% 0% 0% 9% 8% 10% 0% 0% 0% 0% 0% 0%
Missing 0% 2% 12% 2% 0% 2% 100% 0% 0% 3% 35% 5%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

c- MACS:

MACS Distribution per site
MACS ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Level I 0% 2% 14% 0% 0% 0% 0% 0% 0% 0% 0% 4%
Level II 0% 4% 18% 0% 0% 0% 0% 0% 0% 0% 0% 5%
Level III 0% 1% 14% 0% 0% 2% 0% 0% 0% 0% 0% 4%
Level IV 0% 1% 14% 0% 0% 0% 0% 0% 0% 0% 0% 4%
Level V 0% 2% 13% 0% 0% 0% 0% 0% 0% 0% 0% 4%
Not Assessed 0% 18% 0% 0% 0% 2% 0% 7% 0% 0% 0% 3%
Missing 100% 72% 28% 100% 100% 97% 100% 93% 100% 100% 100% 76%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

d- CFCS:

CFCS Distribution per site
CFCS ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Level I 0% 0% 7% 0% 0% 0% 0% 0% 0% 0% 0% 2%
Level II 0% 0% 3% 0% 0% 1% 0% 0% 0% 0% 0% 1%
Level III 0% 0% 3% 0% 0% 0% 0% 0% 0% 0% 0% 1%
Level IV 0% 0% 6% 0% 0% 0% 0% 0% 0% 0% 0% 1%
Level V 0% 0% 2% 0% 0% 0% 0% 0% 0% 0% 0% 1%
Not Assessed 0% 27% 0% 0% 0% 2% 0% 7% 0% 0% 0% 5%
Missing 100% 73% 78% 100% 100% 97% 100% 93% 100% 100% 100% 89%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

e- Motor Type/ Muscle Disorder/ Muscle Tone:

Muscle Tone Distribution per site
Muscle_Tone ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Spastic 78% 54% 67% 80% 73% 81% 33% 7% 48% 61% 61% 63%
Dystonic 5% 2% 1% 0% 0% 0% 33% 0% 0% 0% 0% 1%
Athetoid 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Chorea 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Hypotonic 1% 0% 10% 0% 0% 0% 0% 0% 0% 0% 3% 3%
Rigidity 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Ataxic 0% 0% 1% 0% 0% 0% 0% 0% 0% 1% 0% 1%
Mixed 17% 35% 7% 15% 27% 19% 0% 93% 44% 4% 16% 12%
Other 0% 0% 0% 0% 0% 0% 0% 0% 0% 27% 0% 13%
Missing 0% 8% 13% 4% 0% 0% 33% 0% 8% 7% 19% 9%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

f- Topography (CP Distribution):

CP Distribution per site
CP_Distribution ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Unilateral 7% 22% 14% 0% 4% 2% 0% 0% 4% 15% 77% 15%
Bilateral Symmetric 92% 64% 63% 74% 81% 93% 67% 87% 72% 59% 0% 63%
Triplegia 1% 10% 6% 24% 12% 5% 0% 13% 16% 0% 0% 4%
Missing 0% 4% 17% 2% 4% 0% 33% 0% 8% 27% 23% 18%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

g- Gestational Age:

Gestational Age counts per site
Gestational_Age ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
0-27 14% 14% 22% 20% 31% 12% 67% 40% 4% 0% 0% 9%
28-31 16% 11% 13% 9% 8% 20% 33% 13% 0% 0% 0% 7%
32-36 22% 17% 15% 11% 12% 22% 0% 7% 4% 0% 0% 8%
37+ 42% 42% 38% 7% 35% 40% 0% 27% 0% 0% 0% 20%
Missing 7% 15% 11% 54% 15% 5% 0% 13% 92% 100% 100% 55%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

Seizures data

a- Seizures:

Seizures data per site
seizure ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 61% 37% 34% 15% 54% 34% 33% 33% 12% 12% 0% 25%
No/Only in the past 38% 59% 36% 80% 42% 66% 67% 67% 64% 29% 0% 39%
Missing 2% 3% 29% 4% 4% 0% 0% 0% 24% 58% 100% 37%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

b- Last Generalized Tonic Clonic (GTC) seizure:

Last Generalized Tonic Clonic seizure data per site
LastGTC ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Never 1% 1% 3% 0% 15% 20% 0% 67% 4% 0% 0% 2%
Today 0% 0% 0% 0% 0% 2% 0% 0% 0% 0% 0% 0%
1-30 days ago 0% 0% 3% 0% 4% 2% 0% 0% 0% 0% 0% 1%
1-12 months ago 0% 0% 3% 2% 0% 2% 0% 0% 0% 0% 0% 1%
1-2 years ago 0% 0% 2% 0% 0% 0% 0% 0% 0% 0% 0% 0%
More than 2 years ago 0% 0% 5% 0% 0% 0% 0% 7% 0% 0% 0% 1%
Uncertain 2% 7% 2% 2% 8% 12% 0% 27% 0% 0% 0% 2%
Missing 98% 91% 84% 96% 73% 63% 100% 0% 96% 100% 100% 93%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

c- Last Motor seizure (non-GTC):

Last Motor Seizure (non-GTC) data per site
Last_motor_seizure ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Never 0% 1% 6% 0% 15% 20% 0% 67% 4% 0% 0% 3%
Today 0% 0% 1% 0% 0% 2% 0% 7% 0% 0% 0% 0%
1-30 days ago 0% 0% 1% 0% 0% 0% 0% 0% 0% 0% 0% 0%
1-12 months ago 0% 0% 1% 0% 0% 2% 0% 0% 0% 0% 0% 0%
1-2 years ago 0% 0% 1% 2% 0% 0% 0% 0% 0% 0% 0% 0%
More than 2 years ago 1% 0% 3% 0% 0% 0% 0% 0% 0% 0% 0% 1%
Uncertain 2% 8% 2% 4% 8% 14% 0% 27% 0% 0% 0% 3%
Missing 98% 91% 85% 93% 77% 64% 100% 0% 96% 100% 100% 93%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

d- Last non Motor seizure:

Last non-Motor Seizure data per site
Last_non_motor_seizure ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Never 1% 1% 6% 0% 12% 20% 0% 67% 4% 0% 0% 3%
Today 0% 0% 1% 0% 0% 1% 0% 0% 0% 0% 0% 0%
1-30 days ago 0% 0% 2% 0% 0% 0% 0% 0% 0% 0% 0% 1%
1-12 months ago 0% 0% 1% 0% 0% 2% 0% 0% 0% 0% 0% 0%
1-2 years ago 0% 0% 0% 0% 4% 0% 0% 7% 0% 0% 0% 0%
More than 2 years ago 0% 0% 2% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Uncertain 2% 7% 3% 4% 8% 14% 0% 27% 0% 0% 0% 3%
Missing 98% 91% 85% 96% 77% 64% 100% 0% 96% 100% 100% 93%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

e- Number of Days affected by seizures:

Number of days affected by Seizure data per site
DaysAffectedBySeizure ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
All 28 Days 0% 0% 2% 0% 4% 13% 0% 7% 0% 0% 0% 1%
15 to 27 days 0% 0% 1% 0% 0% 0% 0% 0% 0% 0% 0% 0%
4 to 14 days 0% 0% 1% 0% 0% 1% 0% 0% 0% 0% 0% 0%
2 to 3 days 0% 0% 1% 0% 0% 1% 0% 0% 0% 0% 0% 0%
1 day 0% 0% 1% 0% 0% 1% 0% 0% 0% 0% 0% 0%
No days 1% 2% 11% 0% 15% 12% 0% 80% 4% 0% 0% 4%
Uncertain 2% 6% 1% 4% 8% 10% 0% 13% 0% 0% 0% 2%
Missing 98% 91% 83% 96% 73% 63% 100% 0% 96% 100% 100% 92%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

f- Number of Days affected by Seizure Treatments side effects:

Number of days affected by Seizure Treatments side effects data per site
DaysAffectedBySeizureTx ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
All 28 Days 0% 0% 0% 0% 0% 12% 0% 7% 0% 0% 0% 0%
15 to 27 days 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
4 to 14 days 0% 0% 0% 0% 0% 1% 0% 0% 0% 0% 0% 0%
2 to 3 days 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
1 day 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
No days 1% 2% 14% 2% 12% 11% 0% 73% 4% 0% 0% 5%
Uncertain 2% 7% 1% 4% 15% 13% 0% 20% 0% 0% 0% 2%
Missing 98% 91% 84% 93% 73% 63% 100% 0% 96% 100% 100% 93%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

g- Seizure Treatments:

Seizure Treatments data per site
Seizure_Treatments ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Medications 1% 35% 31% 4% 15% 33% 33% 33% 0% 12% 0% 21%
Ketogenic Diet 1% 3% 1% 2% 0% 0% 0% 7% 0% 1% 0% 1%
VNS 0% 0% 1% 0% 0% 1% 0% 13% 0% 1% 0% 1%
Epilepsy Surgery 0% 0% 1% 2% 0% 0% 0% 7% 0% 0% 0% 0%
Other 0% 1% 1% 0% 0% 0% 0% 0% 0% 6% 0% 3%
Missing 99% 65% 69% 93% 85% 67% 67% 67% 100% 85% 100% 77%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

h- Seizures Controlled (Parents’ Opinion):

Seizures Controlled (Parents’ Opinion) data per site
ParentsOpinion ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Controlled 0% 11% 27% 4% 12% 30% 33% 13% 0% 0% 0% 10%
Poorly Controlled 0% 4% 4% 0% 4% 3% 0% 7% 0% 0% 0% 2%
Missing 100% 85% 69% 96% 85% 67% 67% 80% 100% 100% 100% 88%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

Behavioral and Physical Issues

a- Behavioral Disorders:

Behavioral Disorder data per site
Behavioral_Disorder ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
ADHD 0% 4% 9% 0% 0% 4% 0% 20% 0% 0% 3% 3%
Autism/Autism Spectrum 0% 6% 7% 2% 0% 1% 0% 0% 0% 0% 0% 3%
Mood Disorder 0% 0% 6% 0% 0% 0% 0% 0% 0% 0% 0% 2%
Anxiety Disorder 0% 1% 9% 0% 0% 2% 33% 0% 0% 0% 16% 3%
Self-Injurious Behavior 0% 0% 5% 0% 0% 0% 0% 0% 0% 0% 3% 1%
Congenital Malformations of Brain Development 0% 23% 0% 0% 0% 0% 0% 7% 0% 0% 0% 4%
Hydrocephalus 1% 15% 2% 15% 4% 10% 0% 13% 0% 0% 0% 4%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

b- Vision Status:

Vision Status per site
Vision_Status ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Normal 35% 8% 31% 70% 58% 61% 67% 40% 32% 33% 0% 29%
Impaired 62% 11% 50% 26% 42% 39% 0% 60% 44% 7% 16% 22%
Blind 0% 0% 2% 0% 0% 0% 0% 0% 0% 5% 0% 3%
Missing 2% 81% 17% 4% 0% 0% 33% 0% 24% 56% 84% 46%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

c- Hearing Status:

Hearing Status per site
Hearing_Status ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Normal 82% 12% 74% 85% 92% 80% 67% 53% 48% 40% 0% 47%
Impaired 12% 4% 8% 7% 8% 20% 0% 47% 28% 5% 0% 7%
Deaf 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Missing 6% 83% 17% 9% 0% 1% 33% 0% 24% 54% 100% 46%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

d- Feeding Tube Required:

Feeding Tube data per site
FeedingTubeRequired ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 1% 31% 22% 17% 8% 54% 67% 27% 0% 0% 0% 13%
No 2% 61% 0% 78% 19% 46% 33% 73% 12% 0% 0% 14%
Missing 98% 8% 78% 4% 73% 0% 0% 0% 88% 100% 100% 73%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

e- Feeding Tube Type:

Feeding Tube Type data per site
FeedingTubeType ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Oral Only 0% 0% 63% 0% 0% 0% 0% 0% 0% 38% 71% 35%
Oral and G-Tube 0% 11% 7% 2% 8% 1% 33% 7% 0% 4% 26% 6%
G-Tube Only 1% 15% 10% 15% 0% 49% 33% 20% 0% 5% 0% 10%
G-J Tube Only 0% 3% 3% 0% 0% 4% 0% 0% 0% 0% 0% 1%
Oral and J-Tube 0% 0% 1% 0% 0% 0% 0% 0% 0% 0% 0% 0%
G-Tube Only and G-J Tube Only 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Missing 99% 69% 17% 83% 92% 46% 33% 73% 100% 53% 3% 48%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

f- Constipation:

Number of patients that have constipation in the registry is 843 which makes a percentage of 19%

Constipation data per site
Constipation ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 0% 0% 71% 0% 0% 0% 33% 7% 0% 0% 42% 19%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

g- Pain:

Pain data per site
PainInLast2Weeks ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 0% 5% 17% 7% 0% 6% 33% 13% 4% 0% 0% 6%
No 1% 89% 18% 89% 27% 90% 67% 53% 8% 0% 0% 25%
Missing 99% 6% 64% 4% 73% 4% 0% 33% 88% 100% 100% 70%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

h- Tone Assessment:

Tone Assessment Scale data per site
ToneAssessmentScales ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Modified Ashworth 0% 11% 2% 0% 0% 0% 0% 0% 0% 0% 65% 3%
Modified Tardieu 0% 2% 0% 0% 0% 0% 0% 0% 0% 0% 0% 0%
Ashworth 0% 0% 61% 0% 0% 1% 0% 0% 0% 0% 0% 16%
Tardieu R1 / R2 0% 24% 73% 0% 0% 0% 0% 0% 0% 0% 45% 23%
Missing 100% 76% 21% 100% 100% 99% 100% 100% 100% 100% 16% 75%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

Surgeries

a- Selective Dorsal Rhizotomy (SDR):

Number of patients that have Selective Dorsal Rhizotomy Performed in the registry is 210 which makes a percentage of 5%

Selective Dorsal Rhizotomy data per site
SDR ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 0% 2% 10% 74% 62% 23% 0% 0% 0% 0% 0% 5%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

b- Intrathecal Baclofen Pumps (BP):

Number of patients that have Intrathecal Baclofen Pumps Performed in the registry is 130 which makes a percentage of 3%

Baclofen Pumps data per site
BP ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 0% 4% 0% 7% 42% 64% 0% 7% 0% 0% 0% 3%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516

c- Lower Extremity Interventions (ORTHO LE) :

Number of patients that have LE Interventions Performed in the registry is 843 which makes a percentage of 19%

LE Interventions data per site
LE ET66 NT75 DI74 SL74 BE65 OM82 NL77 LQ48 BH77 RD70 LY80 Registry
Yes 44% 7% 63% 0% 0% 0% 0% 0% 0% 0% 0% 19%
# of patients 120 814 1157 46 26 132 3 15 25 2147 31 4516