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| Name | Class |
|---|---|
| Alexion Pharmaceuticals, Inc. | INDUSTRY |
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This study is being done to develop a database of pediatric patients in order to study the cause, early detection and best treatment for neuromyelitis optica spectrum disorder (NMOSD) in pediatric patients.
This study is being done to collect information on the natural history of NMOSD in pediatric AQP4-IgG seropositive patients. A major restriction in performing drug studies in pediatric patients with NMOSD is limited information on the course of the disease in these patients. Collecting clinical information over the course of a 1 year observational study would inform on the natural history of the disease in these patients. A repository of pediatric patients with rare diseases can increase knowledge on the natural history of the specific disease, assist in identifying appropriate patients fulfilling specified criteria for drug studies and potentially serve as a control group.
Timepoints: Baseline, 3mo, 6mo, 9mo, 12mo (+/- 1 mo for each time point).
Baseline data:
Self-Report Assessments will be:
At follow-up visits 3mo, 6mo, 9mo, 12mo (+/- 1 mo for each time point):
Self-Report Assessments at follow-up will be:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Pediatric Neuromyelitis Optica | Participants under the age of 18 that are positive for Aquaporin-4 antibody. |
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| Measure | Description | Time Frame |
|---|---|---|
| Time to relapse | Relapse events of NMOSD defined by clinical worsening of neurological symptoms and treatment. | One year. |
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Inclusion Criteria:
Exclusion Criteria:
- Inability to complete required forms via phone, mail, or email.
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Any pediatric patients that have tested positive for AQP4 antibody regardless of geographic location.
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| Name | Affiliation | Role |
|---|---|---|
| Sean J Pittock, M.D. | Mayo Clinic | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Mayo Clinic | Rochester | Minnesota | 55905 | United States |
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| Label | URL |
|---|---|
| Mayo Clinic Clinical Trials | View source |
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| ID | Term |
|---|---|
| D009471 | Neuromyelitis Optica |
| ID | Term |
|---|---|
| D009188 | Myelitis, Transverse |
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
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| D009902 | Optic Neuritis |
| D009901 | Optic Nerve Diseases |
| D003389 | Cranial Nerve Diseases |
| D003711 | Demyelinating Diseases |
| D005128 | Eye Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |