Find out more about clinical trials at Johns Hopkins.
CAPTURE: Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate
Principal Investigator: Carlos A. Pardo-Villamizar, MD
JHM IRB Protocol #: 00050910
STUDY DETAILS: Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate, is an innovative, multi-center, pediatric transverse myelitis study that involves five clinical centers at the United States and Canada. The study is led by Dr. Benjamin Greenberg, MD, MHS at University of Texas Southwestern/Childrens Medical Center, Dallas, TX and researchers at Johns Hopkins Hospital, Kennedy Krieger Institute, Childrens Hospital of Philadelphia and The Hospital for Sick Children (SickKids), of the University of Toronto, Canada. The study is the first to combine assessments from health care providers and patients relative to pediatric TM outcomes. The collaboration involves multiple health care centers across North America, the Transverse Myelitis Association and most important, patients. The study is designed to assess the current state of Pediatric TM in terms of diagnosis, treatment and outcomes. Ultimately, it will lead to an improved understanding of the current status of care for individuals afflicted with TM and reveal what are the current best practices. Patients will educate clinicians and the study will educate the broader health care system about what outcomes are important and achievable. It will develop a multi-metric outcome measure based on combined patient generated and provider generated data that can be used in future controlled trials. Participation in this study may involve travel to one of the five participating centers, whichever is closest to the patient geographically, at 3 month, 6 month, and 12 month intervals. It will include a review of treatment records, imaging, and an examination by a physician. Internet access is required for completion of questionnaires by the child and/or parents.
ELIGIBLE PARTICIPANTS: Children diagnosed with transverse myelitis between the ages of 0 to 18 years (or 17 years at onset) within 90 days of the initial onset of symptoms. If you are interested in participating, please contact Dr. Carlos A. Pardo-Villamizar by email at pediatricTMhopkins@jhmi.edu or by phone at 410-502-7099.
Soliris for Prevention of NMO Relapses
This research study launched in February 2014 and plans to open at 100 sites worldwide. Johns Hopkins is currently open from recruitment into this study. Soliris is an intravenous infusion given every 2 weeks that blocks the destruction complement immune system. In a small study at the Mayo Clinic, Soliris proved very effective in preventing relapses in NMO. This research trial is an add-on design, which means you stay on your current NMO medication and then get randomized to either receive Soliris (66% chance) or placebo (33% chance) in addition. In either case, after a single relapse, you are moved to the open phase in which you are guaranteed to receive Soliris. For more details, visit http://clinicaltrials.gov/ct2/show/NCT01892345.
Neuroimaging and Neurobehavioral Outcomes of Pediatric Neuromyelitis Optica: A Pilot Study
Study Details: The primary objective of this study is to determine how well specific neuroimaging modalities detect the different aspects of anomalous white matter development associated with pediatric NMO. Our purpose is to acquire data using neuroimaging obtained at 3.0 Tesla as well as neurobehavioral data to better characterize neuroimaging features and function in this rare population. This study takes part in two phases. For the first part, participants will undergo neuropsychological (cognitive) testing and have a “mock” or practice magnetic resonance imaging (MRI) scan”. The purpose of this “mock” scan is to improve comfort, decrease potential anxiety, and to train you to lie still while in the scanner. After the “mock”/practice scan, participants will have the MRI exam. The MRI scan could take up to 1 hour. Participants are in this study for one day for approximately 3-4 hours.
Eligible Participants: Individuals aged 13-18 years with NMO may join. We will also be enrolling typically developing individuals of the same ages without a NMO, to serve as a control group.
Contact Information: If you are interested in participating in this study, contact Taylor Koriakin at 443-923-7927 or Koriakin@kennedykreiger.org or the Principal Investigator, Ana Arenivas, Ph.D., at 443-923-4462 or Arenivas@kennedykrieger.org.