CPRN Registry Quality Assessment
Date: 08/26/2022
CPRN Enrollments
Total number of patients in the Registry is 7160
Demographics
a- Age groups:
Percentages of Age Groups Distribution per site
| Age_Groups | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 0-2 | 0% | 2% | 1% | 0% | 0% | 0% | 0% | 2% | 7% | 0% | 0% | 3% | 0% | 0% | 0% | 1% |
| 3-5 | 5% | 12% | 15% | 13% | 0% | 2% | 0% | 7% | 14% | 7% | 6% | 24% | 0% | 0% | 0% | 9% |
| 6-10 | 23% | 31% | 29% | 49% | 26% | 20% | 33% | 43% | 51% | 26% | 26% | 45% | 0% | 0% | 0% | 23% |
| 11-18 | 54% | 38% | 33% | 27% | 60% | 50% | 33% | 41% | 21% | 40% | 58% | 24% | 0% | 0% | 0% | 30% |
| 19-25 | 16% | 16% | 12% | 9% | 14% | 23% | 33% | 7% | 7% | 25% | 10% | 1% | 0% | 0% | 0% | 14% |
| 26-35 | 2% | 1% | 7% | 2% | 0% | 4% | 0% | 0% | 0% | 2% | 0% | 4% | 0% | 0% | 0% | 3% |
| 36+ | 0% | 0% | 3% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 1% |
| Missing | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 100% | 100% | 100% | 19% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
b- Gender
Gender Distribution per site
| Gender | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Female | 36% | 42% | 43% | 39% | 46% | 39% | 67% | 45% | 33% | 44% | 58% | 34% | 44% | 42% | 44% | 43% |
| Male | 64% | 57% | 57% | 61% | 54% | 61% | 33% | 55% | 65% | 56% | 42% | 66% | 56% | 58% | 56% | 57% |
| Unknown | 0% | 0% | 0% | 0% | 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% | 0% | 0% | 0% | 0% |
| Null | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
c- Race:
Race Distribution per site
| Race | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| American Indian or Alaska Native | 0% | 1% | 0% | 0% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 2% | 0% | 3% | 1% |
| Asian | 4% | 7% | 3% | 2% | 0% | 2% | 0% | 2% | 5% | 0% | 10% | 1% | 3% | 2% | 2% | 3% |
| Black or African American | 11% | 6% | 20% | 33% | 18% | 2% | 0% | 7% | 12% | 0% | 10% | 16% | 4% | 17% | 10% | 9% |
| Native Hawaiian or Other Pacific Islander | 0% | 2% | 0% | 0% | 0% | 1% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| White | 58% | 54% | 66% | 65% | 80% | 89% | 67% | 70% | 53% | 0% | 39% | 74% | 68% | 69% | 57% | 44% |
| Multiple race | 0% | 7% | 10% | 0% | 0% | 0% | 33% | 2% | 2% | 0% | 0% | 4% | 13% | 2% | 0% | 4% |
| Refuse to answer | 2% | 6% | 1% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 10% | 0% | 2% |
| Unknown | 10% | 7% | 0% | 0% | 2% | 0% | 0% | 5% | 7% | 0% | 0% | 5% | 3% | 0% | 2% | 2% |
| No information | 14% | 5% | 0% | 0% | 0% | 2% | 0% | 11% | 12% | 0% | 0% | 1% | 0% | 0% | 0% | 1% |
| Other | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 42% | 0% | 7% | 0% | 2% | 1% |
| Null | 1% | 5% | 0% | 0% | 0% | 0% | 0% | 0% | 9% | 100% | 0% | 0% | 0% | 0% | 24% | 33% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
d- Ethnicity
Ethnicity Distribution per site
| Ethnicity | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Not Hispanic or Latino | 74% | 75% | 96% | 95% | 76% | 89% | 100% | 70% | 37% | 0% | 48% | 92% | 76% | 90% | 67% | 59% |
| Hispanic or Latino | 10% | 19% | 3% | 3% | 4% | 11% | 0% | 25% | 12% | 0% | 52% | 3% | 21% | 9% | 26% | 8% |
| Refuse to answer | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| Unknown | 9% | 1% | 0% | 0% | 12% | 0% | 0% | 0% | 7% | 0% | 0% | 3% | 1% | 0% | 6% | 1% |
| No info | 7% | 5% | 0% | 2% | 8% | 1% | 0% | 5% | 30% | 0% | 0% | 2% | 3% | 0% | 0% | 1% |
| Other | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| Null | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 14% | 100% | 0% | 0% | 0% | 0% | 0% | 30% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
CP specific data
a- Etiology:
Etiology Distribution per site
| Etiology | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Hypoxic Ischemic Encephalopathy | 7% | 15% | 10% | 3% | 16% | 4% | 0% | 23% | 0% | 0% | 3% | 13% | 2% | 1% | 0% | 6% |
| Prematurity- Intra-Ventricular Hemorrhage | 7% | 10% | 9% | 29% | 10% | 17% | 33% | 9% | 5% | 0% | 0% | 1% | 3% | 1% | 0% | 5% |
| Prematurity- Peri-Ventricular Leukomalacia | 19% | 6% | 15% | 15% | 8% | 7% | 33% | 27% | 21% | 0% | 0% | 2% | 3% | 1% | 0% | 6% |
| Prematurity- White Matter Injury | 1% | 1% | 4% | 3% | 0% | 1% | 33% | 2% | 0% | 0% | 0% | 21% | 1% | 1% | 0% | 2% |
| Prematurity- Multiple Injuries | 0% | 1% | 0% | 0% | 0% | 11% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 0% |
| Congenital Infection | 4% | 2% | 2% | 1% | 8% | 1% | 0% | 0% | 2% | 0% | 0% | 1% | 0% | 1% | 0% | 1% |
| Congenital Stroke | 1% | 7% | 3% | 3% | 0% | 2% | 0% | 0% | 2% | 0% | 0% | 2% | 1% | 1% | 0% | 2% |
| Brain Malformation | 4% | 8% | 7% | 4% | 4% | 4% | 0% | 2% | 0% | 0% | 0% | 4% | 6% | 2% | 0% | 4% |
| Genetic Condition | 6% | 2% | 4% | 1% | 0% | 10% | 0% | 2% | 2% | 0% | 0% | 2% | 0% | 1% | 0% | 2% |
| Other | 12% | 15% | 0% | 14% | 2% | 29% | 0% | 16% | 0% | 0% | 0% | 9% | 0% | 0% | 0% | 4% |
| Unknown | 12% | 19% | 16% | 16% | 12% | 10% | 0% | 11% | 0% | 0% | 0% | 5% | 2% | 2% | 0% | 8% |
| Mixed | 6% | 11% | 4% | 7% | 2% | 4% | 0% | 5% | 2% | 0% | 39% | 40% | 1% | 3% | 0% | 5% |
| Missing | 22% | 3% | 25% | 2% | 38% | 0% | 0% | 0% | 65% | 100% | 58% | 0% | 78% | 85% | 100% | 55% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
b- GMFCS:
GMFCS Distribution per site
| GMFCS | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Level I | 9% | 24% | 30% | 3% | 0% | 1% | 0% | 7% | 12% | 25% | 13% | 4% | 6% | 5% | 12% | 20% |
| Level II | 18% | 19% | 14% | 13% | 8% | 11% | 0% | 7% | 28% | 20% | 10% | 19% | 5% | 4% | 17% | 16% |
| Level III | 12% | 10% | 10% | 27% | 20% | 7% | 0% | 20% | 26% | 13% | 16% | 25% | 4% | 2% | 13% | 11% |
| Level IV | 28% | 16% | 15% | 25% | 32% | 14% | 0% | 23% | 16% | 17% | 6% | 28% | 6% | 2% | 9% | 14% |
| Level V | 30% | 29% | 18% | 13% | 34% | 57% | 0% | 39% | 5% | 21% | 19% | 25% | 3% | 4% | 32% | 21% |
| Not Assessed | 3% | 1% | 0% | 15% | 6% | 8% | 0% | 5% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 1% |
| Missing | 0% | 1% | 14% | 3% | 0% | 2% | 100% | 0% | 14% | 3% | 35% | 0% | 76% | 84% | 16% | 16% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
c- MACS:
MACS Distribution per site
| MACS | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Level I | 1% | 1% | 13% | 0% | 0% | 0% | 0% | 0% | 7% | 0% | 0% | 11% | 1% | 0% | 2% | 4% |
| Level II | 0% | 2% | 18% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 16% | 5% | 0% | 6% | 5% |
| Level III | 0% | 1% | 13% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 2% | 3% | 0% | 2% | 3% |
| Level IV | 0% | 1% | 12% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 2% | 1% | 0% | 4% | 3% |
| Level V | 0% | 1% | 12% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 2% | 2% | 0% | 7% | 3% |
| Not Assessed | 0% | 11% | 0% | 0% | 0% | 3% | 0% | 2% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 2% |
| Missing | 99% | 83% | 32% | 100% | 100% | 96% | 100% | 98% | 93% | 100% | 100% | 66% | 87% | 100% | 78% | 79% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
d- CFCS:
CFCS Distribution per site
| CFCS | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Level I | 1% | 0% | 18% | 0% | 0% | 0% | 0% | 0% | 5% | 0% | 0% | 11% | 5% | 0% | 3% | 5% |
| Level II | 0% | 0% | 5% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 5% | 3% | 0% | 2% | 2% |
| Level III | 0% | 0% | 5% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 5% | 3% | 0% | 2% | 2% |
| Level IV | 0% | 0% | 13% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 3% | 5% | 0% | 6% | 3% |
| Level V | 0% | 0% | 6% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 2% | 0% | 0% | 4% | 2% |
| Not Assessed | 0% | 16% | 0% | 0% | 0% | 4% | 0% | 2% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 3% |
| Missing | 99% | 84% | 52% | 100% | 100% | 96% | 100% | 98% | 95% | 100% | 100% | 73% | 84% | 100% | 82% | 84% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Spastic | 84% | 46% | 65% | 79% | 68% | 81% | 33% | 50% | 51% | 61% | 61% | 41% | 27% | 15% | 0% | 50% |
| Dystonic | 4% | 3% | 2% | 1% | 0% | 0% | 33% | 2% | 2% | 0% | 0% | 1% | 2% | 1% | 0% | 1% |
| Athetoid | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| Chorea | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 3% | 0% | 0% | 0% | 0% | 0% |
| Hypotonic | 0% | 1% | 10% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 3% | 4% | 1% | 2% | 0% | 3% |
| Rigidity | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| Ataxic | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 1% | 3% | 0% | 0% | 0% | 0% | 1% |
| Mixed | 10% | 43% | 5% | 16% | 32% | 19% | 0% | 48% | 30% | 4% | 10% | 55% | 9% | 4% | 0% | 14% |
| Other | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 27% | 0% | 0% | 0% | 0% | 0% | 8% |
| Missing | 1% | 6% | 17% | 2% | 0% | 0% | 33% | 0% | 16% | 7% | 19% | 0% | 61% | 77% | 100% | 23% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
f- Topography (CP Distribution):
CP Distribution per site
| CP_Distribution | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Unilateral | 8% | 18% | 13% | 1% | 4% | 2% | 0% | 2% | 7% | 15% | 77% | 9% | 7% | 3% | 0% | 12% |
| Bilateral Symmetric | 87% | 32% | 61% | 76% | 86% | 94% | 0% | 82% | 65% | 59% | 0% | 79% | 13% | 13% | 0% | 46% |
| Triplegia | 1% | 3% | 6% | 22% | 8% | 4% | 0% | 14% | 12% | 0% | 0% | 11% | 3% | 2% | 0% | 3% |
| Missing | 4% | 48% | 21% | 1% | 2% | 1% | 100% | 2% | 16% | 27% | 23% | 1% | 77% | 82% | 100% | 39% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
g- Gestational Age:
Gestational Age counts per site
| Gestational_Age | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 0-27 | 7% | 13% | 5% | 21% | 20% | 13% | 67% | 27% | 5% | 0% | 0% | 14% | 0% | 0% | 0% | 5% |
| 28-31 | 14% | 10% | 2% | 17% | 10% | 20% | 33% | 11% | 2% | 0% | 0% | 21% | 0% | 0% | 0% | 4% |
| 32-36 | 29% | 15% | 3% | 16% | 10% | 20% | 0% | 18% | 2% | 0% | 0% | 24% | 0% | 0% | 0% | 5% |
| 37+ | 36% | 38% | 7% | 10% | 32% | 41% | 0% | 23% | 7% | 0% | 0% | 35% | 0% | 0% | 0% | 12% |
| Missing | 13% | 24% | 83% | 36% | 28% | 6% | 0% | 20% | 84% | 100% | 100% | 6% | 100% | 100% | 100% | 74% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
Seizures data
a- Seizures:
Seizures data per site
| seizure | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 58% | 39% | 34% | 24% | 50% | 38% | 33% | 39% | 12% | 12% | 0% | 42% | 6% | 4% | 27% | 25% |
| No/Only in the past | 41% | 56% | 27% | 74% | 48% | 62% | 67% | 61% | 58% | 29% | 0% | 57% | 0% | 0% | 0% | 31% |
| Missing | 1% | 4% | 39% | 2% | 2% | 0% | 0% | 0% | 30% | 58% | 100% | 1% | 94% | 96% | 73% | 45% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Never | 1% | 13% | 5% | 27% | 28% | 25% | 0% | 52% | 21% | 0% | 0% | 12% | 0% | 0% | 0% | 5% |
| Today | 0% | 0% | 1% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| 1-30 days ago | 0% | 0% | 5% | 1% | 2% | 1% | 0% | 2% | 0% | 0% | 0% | 3% | 2% | 0% | 0% | 1% |
| 1-12 months ago | 0% | 0% | 4% | 4% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 3% | 1% | 0% | 0% | 1% |
| 1-2 years ago | 0% | 0% | 3% | 1% | 2% | 1% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 1% |
| More than 2 years ago | 0% | 1% | 8% | 4% | 2% | 2% | 0% | 7% | 0% | 0% | 0% | 2% | 1% | 1% | 0% | 2% |
| Uncertain | 0% | 20% | 3% | 14% | 20% | 16% | 0% | 34% | 0% | 0% | 0% | 56% | 0% | 1% | 0% | 7% |
| Missing | 99% | 66% | 71% | 48% | 46% | 53% | 100% | 5% | 79% | 100% | 100% | 24% | 94% | 98% | 100% | 82% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Never | 0% | 13% | 3% | 28% | 34% | 24% | 0% | 57% | 19% | 0% | 0% | 13% | 0% | 0% | 0% | 5% |
| Today | 0% | 0% | 2% | 0% | 0% | 1% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 1% |
| 1-30 days ago | 0% | 0% | 5% | 0% | 0% | 0% | 0% | 2% | 0% | 0% | 0% | 1% | 2% | 0% | 0% | 1% |
| 1-12 months ago | 0% | 0% | 3% | 2% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 1% |
| 1-2 years ago | 0% | 0% | 2% | 1% | 2% | 0% | 0% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 1% |
| More than 2 years ago | 1% | 1% | 6% | 3% | 0% | 2% | 0% | 2% | 0% | 0% | 0% | 2% | 1% | 0% | 0% | 2% |
| Uncertain | 0% | 20% | 4% | 18% | 16% | 18% | 0% | 32% | 0% | 0% | 0% | 59% | 1% | 1% | 0% | 7% |
| Missing | 99% | 66% | 74% | 47% | 48% | 54% | 100% | 5% | 79% | 100% | 100% | 24% | 94% | 98% | 100% | 83% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Never | 1% | 13% | 3% | 28% | 30% | 24% | 0% | 59% | 19% | 0% | 0% | 13% | 0% | 1% | 0% | 5% |
| Today | 0% | 0% | 1% | 0% | 2% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| 1-30 days ago | 0% | 0% | 5% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 2% | 1% | 0% | 0% | 1% |
| 1-12 months ago | 0% | 0% | 3% | 2% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 2% | 1% | 0% | 0% | 1% |
| 1-2 years ago | 0% | 0% | 2% | 0% | 2% | 0% | 0% | 2% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| More than 2 years ago | 0% | 1% | 4% | 2% | 2% | 2% | 0% | 0% | 0% | 0% | 0% | 2% | 0% | 0% | 0% | 1% |
| Uncertain | 0% | 20% | 6% | 20% | 16% | 19% | 0% | 34% | 0% | 0% | 0% | 58% | 3% | 1% | 0% | 8% |
| Missing | 99% | 66% | 76% | 48% | 48% | 54% | 100% | 5% | 79% | 100% | 100% | 24% | 94% | 98% | 100% | 83% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| All 28 Days | 0% | 1% | 2% | 0% | 4% | 12% | 0% | 2% | 0% | 0% | 0% | 1% | 2% | 0% | 0% | 1% |
| 15 to 27 days | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| 4 to 14 days | 0% | 0% | 2% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 1% | 1% | 0% | 0% | 0% |
| 2 to 3 days | 0% | 0% | 2% | 1% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 0% |
| 1 day | 0% | 0% | 2% | 1% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| No days | 1% | 19% | 17% | 40% | 38% | 19% | 0% | 57% | 21% | 0% | 0% | 8% | 2% | 1% | 0% | 9% |
| Uncertain | 0% | 15% | 2% | 10% | 12% | 14% | 0% | 36% | 0% | 0% | 0% | 66% | 0% | 0% | 0% | 6% |
| Missing | 99% | 66% | 71% | 48% | 46% | 53% | 100% | 5% | 79% | 100% | 100% | 24% | 94% | 98% | 100% | 82% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| All 28 Days | 0% | 0% | 1% | 0% | 0% | 12% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 1% |
| 15 to 27 days | 0% | 0% | 1% | 0% | 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% | 1% | 1% | 0% | 0% | 0% |
| 2 to 3 days | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| 1 day | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| No days | 1% | 17% | 20% | 41% | 42% | 18% | 0% | 57% | 21% | 0% | 0% | 8% | 3% | 2% | 0% | 10% |
| Uncertain | 0% | 17% | 4% | 12% | 12% | 16% | 0% | 36% | 0% | 0% | 0% | 68% | 1% | 0% | 0% | 7% |
| Missing | 99% | 66% | 72% | 47% | 46% | 53% | 100% | 5% | 79% | 100% | 100% | 24% | 94% | 98% | 100% | 82% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
g- Seizure Treatments:
Seizure Treatments data per site
| Seizure_Treatments | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Medications | 0% | 30% | 28% | 13% | 14% | 35% | 33% | 27% | 2% | 12% | 0% | 22% | 7% | 4% | 0% | 18% |
| Ketogenic Diet | 0% | 2% | 1% | 1% | 2% | 1% | 0% | 5% | 0% | 1% | 0% | 3% | 0% | 0% | 0% | 1% |
| VNS | 0% | 0% | 1% | 0% | 2% | 1% | 0% | 7% | 0% | 1% | 0% | 1% | 0% | 0% | 0% | 1% |
| Epilepsy Surgery | 0% | 0% | 1% | 1% | 0% | 0% | 0% | 2% | 0% | 0% | 0% | 1% | 1% | 0% | 0% | 0% |
| Other | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 2% | 0% | 6% | 0% | 1% | 0% | 0% | 0% | 2% |
| Missing | 100% | 69% | 72% | 86% | 86% | 65% | 67% | 66% | 98% | 85% | 100% | 76% | 93% | 96% | 100% | 81% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
h- Seizures Controlled (Parents’ Opinion):
Seizures Controlled (Parents’ Opinion) data per site
| ParentsOpinion | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Controlled | 0% | 12% | 25% | 11% | 8% | 33% | 33% | 20% | 2% | 0% | 0% | 22% | 5% | 3% | 0% | 10% |
| Poorly Controlled | 0% | 4% | 3% | 2% | 2% | 2% | 0% | 9% | 0% | 0% | 0% | 1% | 2% | 0% | 0% | 2% |
| Missing | 100% | 84% | 72% | 87% | 90% | 65% | 67% | 70% | 98% | 100% | 100% | 76% | 94% | 96% | 100% | 88% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
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 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| ADHD | 0% | 4% | 8% | 0% | 4% | 4% | 0% | 9% | 0% | 0% | 3% | 4% | 1% | 4% | 0% | 3% |
| Autism/Autism Spectrum | 0% | 6% | 7% | 1% | 2% | 1% | 0% | 2% | 0% | 0% | 0% | 2% | 2% | 3% | 0% | 3% |
| Mood Disorder | 0% | 0% | 5% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 1% |
| Anxiety Disorder | 0% | 1% | 8% | 0% | 0% | 2% | 33% | 0% | 0% | 0% | 16% | 1% | 1% | 2% | 0% | 2% |
| Self-Injurious Behavior | 0% | 0% | 5% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 3% | 1% | 1% | 0% | 0% | 1% |
| Congenital Malformations of Brain Development | 0% | 15% | 0% | 4% | 8% | 0% | 0% | 0% | 0% | 0% | 0% | 4% | 0% | 0% | 0% | 3% |
| Hydrocephalus | 0% | 12% | 6% | 21% | 12% | 11% | 0% | 16% | 7% | 0% | 0% | 12% | 0% | 0% | 0% | 5% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
b- Vision Status:
Vision Status per site
| Vision_Status | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Normal | 42% | 27% | 29% | 67% | 68% | 62% | 67% | 52% | 35% | 33% | 0% | 29% | 7% | 2% | 10% | 27% |
| Impaired | 54% | 21% | 48% | 30% | 28% | 38% | 0% | 43% | 33% | 7% | 16% | 68% | 10% | 5% | 24% | 23% |
| Blind | 0% | 0% | 2% | 0% | 0% | 0% | 0% | 0% | 0% | 5% | 0% | 1% | 0% | 1% | 0% | 2% |
| Missing | 4% | 52% | 21% | 2% | 4% | 0% | 33% | 5% | 33% | 56% | 84% | 2% | 82% | 92% | 66% | 48% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
c- Hearing Status:
Hearing Status per site
| Hearing_Status | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Normal | 84% | 38% | 70% | 91% | 88% | 80% | 67% | 73% | 51% | 40% | 0% | 80% | 17% | 4% | 0% | 43% |
| Impaired | 10% | 7% | 8% | 4% | 12% | 19% | 0% | 25% | 16% | 5% | 0% | 16% | 2% | 1% | 5% | 7% |
| Deaf | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% |
| Missing | 6% | 54% | 21% | 4% | 0% | 1% | 33% | 2% | 33% | 54% | 100% | 4% | 82% | 94% | 95% | 50% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
d- Feeding Tube Required:
Feeding Tube data per site
| FeedingTubeRequired | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 0% | 27% | 21% | 26% | 32% | 53% | 67% | 32% | 0% | 0% | 0% | 19% | 2% | 1% | 0% | 12% |
| No | 1% | 50% | 0% | 70% | 26% | 47% | 33% | 59% | 16% | 0% | 0% | 56% | 0% | 0% | 0% | 13% |
| Missing | 99% | 23% | 79% | 4% | 42% | 0% | 0% | 9% | 84% | 100% | 100% | 24% | 98% | 99% | 100% | 74% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
e- Feeding Tube Type:
Feeding Tube Type data per site
| FeedingTubeType | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Oral Only | 0% | 0% | 59% | 0% | 0% | 0% | 0% | 2% | 0% | 38% | 71% | 0% | 10% | 14% | 0% | 26% |
| Oral and G-Tube | 0% | 8% | 6% | 1% | 4% | 1% | 33% | 5% | 0% | 4% | 26% | 4% | 2% | 1% | 0% | 4% |
| G-Tube Only | 0% | 15% | 8% | 25% | 16% | 48% | 33% | 25% | 0% | 5% | 0% | 16% | 2% | 3% | 0% | 9% |
| G-J Tube Only | 0% | 3% | 3% | 0% | 2% | 3% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 1% |
| Oral and J-Tube | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 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% | 0% | 0% | 0% | 0% |
| Missing | 100% | 73% | 23% | 74% | 78% | 47% | 33% | 68% | 100% | 53% | 3% | 80% | 86% | 82% | 100% | 59% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
f- Constipation:
Number of patients that have constipation in the registry is 1552 which makes a percentage of 22%
Constipation data per site
| Constipation | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 1% | 0% | 67% | 0% | 0% | 1% | 33% | 2% | 0% | 0% | 42% | 11% | 42% | 51% | 0% | 22% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
g- Pain:
Pain data per site
| PainInLast2Weeks | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 0% | 4% | 23% | 5% | 14% | 5% | 33% | 9% | 7% | 0% | 0% | 0% | 0% | 2% | 0% | 6% |
| No | 1% | 78% | 11% | 89% | 40% | 90% | 67% | 59% | 16% | 0% | 0% | 76% | 0% | 0% | 0% | 23% |
| Missing | 99% | 18% | 66% | 5% | 46% | 5% | 0% | 32% | 77% | 100% | 100% | 24% | 100% | 98% | 100% | 71% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
h- Tone Assessment:
Tone Assessment Scale data per site
| ToneAssessmentScales | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Modified Ashworth | 0% | 7% | 5% | 0% | 0% | 0% | 0% | 0% | 9% | 0% | 65% | 0% | 4% | 0% | 30% | 5% |
| Modified Tardieu | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 1% | 0% | 0% | 0% | 0% |
| Ashworth | 0% | 0% | 60% | 0% | 0% | 1% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 13% |
| Tardieu R1 / R2 | 1% | 14% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 45% | 1% | 0% | 0% | 19% | 4% |
| Missing | 99% | 85% | 38% | 100% | 100% | 99% | 100% | 100% | 91% | 100% | 16% | 98% | 96% | 100% | 69% | 81% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
Surgeries
a- Selective Dorsal Rhizotomy (SDR):
Number of patients that have Selective Dorsal Rhizotomy Performed in the registry is 371 which makes a percentage of 5%
Selective Dorsal Rhizotomy data per site
| SDR | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 13% | 2% | 7% | 75% | 40% | 29% | 0% | 0% | 26% | 0% | 0% | 38% | 0% | 0% | 0% | 5% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
b- Intrathecal Baclofen Pumps (BP):
Number of patients that have Intrathecal Baclofen Pumps Performed in the registry is 368 which makes a percentage of 5%
Baclofen Pumps data per site
| BP | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 10% | 6% | 6% | 20% | 56% | 66% | 0% | 2% | 2% | 0% | 0% | 6% | 0% | 0% | 2% | 5% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |
c- Lower Extremity Interventions (ORTHO LE) :
Number of patients that have LE Interventions Performed in the registry is 1424 which makes a percentage of 20%
LE Interventions data per site
| LE | ET66 | NT75 | DI74 | SL74 | BE65 | OM82 | NL77 | LQ48 | BH77 | RD70 | LY80 | SC65 | SO68 | DG67 | BE77 | Registry |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | 61% | 4% | 65% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 0% | 35% | 0% | 31% | 0% | 20% |
| # of patients | 107 | 1356 | 1567 | 92 | 50 | 161 | 3 | 44 | 43 | 2147 | 31 | 170 | 233 | 715 | 441 | 7160 |