The Longitudinal CONQUER Study of Rare Neuroimmunologic Disorders

Collaboration on Neuroimmunology: Question, Understand, Educate, Restore - The Longitudinal CONQUER Study of Rare Neuroimmunologic Disorders

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01623076

Enrollment

150

Registered

2012-06-19

Start date

2012-06-30

Completion date

2030-06-30

Last updated

2026-01-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Neuromyelitis Optica, Neuromyelitis Optica Spectrum Disorder, Optic Neuritis, Transverse Myelitis

Keywords

Neuromyelitis Optica, Neuromyelitis Optica Spectrum Disorder, Transverse Myelitis, Optic Neuritis, Biorepository

Brief summary

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.

Detailed description

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

6 Years to No maximum

Healthy volunteers

Yes

Inclusion criteria

* Age 6 years or greater * Male or Female * Patient or Parent (in the case of a minor) able to give informed consent * For patients 10 to 17, patient able to assent * Patient diagnosed with NMO, NMOSD, TM or ON

Exclusion criteria

* Unable to maintain scheduled visits * Patient has known HIV or hepatitis C infection

Design outcomes

Primary

Measure	Time frame	Description
Measure change in standard clinical assessments over time	Every study visit	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

Secondary

Measure	Time frame	Description
Measure change in cognition measures over time	Every study visit	Cognition measures include the SDMT, JLO, and PASAT
Measure change in self-reported quality of life surveys	Every study visit	Surveys include MSNQ, MSQOL-54, QIDS, BDI-II, FSS, ESS, MFIS, BPI, and Neuro-QoL
B cell population changes	Up to 5 years	Measure B cell subtypes and changes over time

Countries

United States

Outcome results