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This study seeks to determine the biologic causes of inflammation in patients with Transverse Myelitis (TM) Neuromyelitis Optica Spectrum Disorder (NMOSD) and related conditions. While patients will be treated according to decisions with their treating physician, this study will collect data and samples from patients prospectively to gain a better understanding of the disease. We are seeking to understand why some patients respond to medications, while others do not. We also seek to understand what happens biologically, preceding relapses. Gathering these data and samples will allow researchers to identify new ways of diagnosing and treating these diseases. Data and samples will be shared with researchers around the world to support collaborative efforts to treat these conditions.
This study seeks to determine the biologic causes of inflammation in patients with Neuromyelitis Optica (NMO), Transverse Myelitis (TM), optic neuritis (ON), related conditions and healthy controls. While patients will be treated according to decisions with their treating physician, this study will collect data and samples from patients prospectively to gain a better understanding of the disease. We are seeking to understand why some patients respond to medications, while others do not. We also seek to understand what happens biologically, preceding relapses. Gathering these data and samples will allow researchers to identify new ways of diagnosing and treating these diseases. Data and samples will be shared with researchers around the world to support collaborative efforts to treat these conditions.
Patients will agree to share medical records, complete questionnaires and donate samples on a timed basis.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Neuromyelitis Optica Spectrum Disorder | Patients diagnosed with NMOSD based on revised diagnostic criteria. Seronegative, anti-AQP4 seropositive and ant-MOG seropositive patients will be included | ||
| Transverse Myelitis and Optic Neuritis | Patients who have had one demyelinating event, not diagnosed with multiple sclerosis and whom are considered at risk for NMO or NMOSD. | ||
| Healthy Controls | patients without a history of CNS inflammation | ||
| Neuromyelitis Optica | patients diagnosed with NMO |
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| Measure | Description | Time Frame |
|---|---|---|
| Measure change in standard clinical assessments over time | Standard clinical assessments include: relapse information, level of disability based on EDSS score, high and low contract visual acuity, ambulation index, optical coherence tomography, and MRI, and neurologic/physical exam | Every study visit |
| Measure | Description | Time Frame |
|---|---|---|
| Measure change in cognition measures over time | Cognition measures include the SDMT, JLO, and PASAT | Every study visit |
| Measure change in self-reported quality of life surveys | Surveys include MSNQ, MSQOL-54, QIDS, BDI-II, FSS, ESS, MFIS, BPI, and Neuro-QoL |
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Inclusion Criteria:
Exclusion Criteria:
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Patients previously diagnosed with Neuromyelitis Optica, Neuromyelitis Optica Spectrum Disorder, Transverse Myelitis and Optic Neuritis will be recruited to take part in a longitudinal study of their disease.
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| Name | Affiliation | Role |
|---|---|---|
| Benjamin M Greenberg, MD | University of Texas Southwestern Medical Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| The University of Texas Southwestern Medical Center | Dallas | Texas | 75390 | United States |
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| Label | URL |
|---|---|
| Transverse Myelitis Association | View source |
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Deidentified data can be shared with IRB approved researchers upon request and approval from PI
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| ID | Term |
|---|---|
| D009471 | Neuromyelitis Optica |
| D009188 | Myelitis, Transverse |
| D009902 | Optic Neuritis |
| ID | Term |
|---|---|
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D009901 | Optic Nerve Diseases |
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Patients will donate serum, plasma, DNA, RNA and white blood cells.
| Every study visit |
| B cell population changes | Measure B cell subtypes and changes over time | Up to 5 years |
| D003389 | Cranial Nerve Diseases |
| D003711 | Demyelinating Diseases |
| D005128 | Eye Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
| D009187 | Myelitis |
| D002494 | Central Nervous System Infections |
| D007239 | Infections |
| D020361 | Paraneoplastic Syndromes, Nervous System |
| D009423 | Nervous System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D010257 | Paraneoplastic Syndromes |
| D002493 | Central Nervous System Diseases |
| D013118 | Spinal Cord Diseases |
| D019636 | Neurodegenerative Diseases |
| D000090862 | Neuroinflammatory Diseases |