Members of SUMMIT
The Expression/genomics, Proteomics, Imaging, and Clinical (EPIC) study is a single-center prospective observational research cohort of MS patients evaluated annually since July 2004 (www.msepicstudy.com). Patients (age 18–65 years) receiving care at the University of California, San Francisco (UCSF) Multiple Sclerosis Center between July 2004 and September 2005 were invited to participate. Ambulatory subjects and those with a recent onset of clinically definite MS (2001 International Panel Diagnostic Criteria)19 or clinically isolated syndrome (CIS) were preferentially recruited, although individuals with all clinical subtypes of the disease participate. Patient retention at 10-year follow-up exceeds 91%.
The Comprehensive Longitudinal Investigation of Multiple Sclerosis at the Brigham and Women’s Hospital (CLIMB; BWH) is a single-center prospective study that has enrolled more than 2,100 patients since the year 2000 (www.climbstudy.org).17 Patients are recruited directly from the clinical practice (median: 1 year since symptom onset), and followed longitudinally with standardized clinical exams every 6 months, and annual MRIs and stored blood samples. Within this umbrella, a subset of patients are enrolled in more detailed studies, including quality of life (QOL) and genetics studies. CLIMB patients’ clinical and neuroimaging measures, while standardized, are derived from routine clinical care. Overall, the dropout rate in CLIMB in 3% per year, and is largely due to patients moving, or the patient’s physician leaving the practice.
From all CLIMB participants, we selected for inclusion into the CLIMB-SUMMIT cohort adult participants with a diagnosis of MS meeting 2010 International Panel criteria, who were recruited into the QOL arm of the CLIMB study (enrolled between 4/5/2000 and 9/3/2013), or those CLIMB subjects who had 10 years of follow-up since first symptom.
The Cemcat is a multidisciplinary MS specific centre that started working back in the early 1990s to evolve and develop into one of the largest centres of its kind in Europe. Based on a holistic and multidisciplinary approach, it caters for about forty percent of the persons living with MS in Catalonia, their families and care givers. About 70 different professional specialties build up the team, namely, neurologists, physical medicine specialists, other physicians, MS nurses, neuropsychologists and psychologists, physical-, occupational-, art-, music-, sport-, speech therapists plus social work specialists, laboratory and clinical researchers plus administration and ancillary staff. From first clinical manifestations of probable demyelinating events, through treatment and clinical trials to neurorehabilitation, our centre can manage every aspect of the disease through every phase and event as one team pursuing common objectives.
Data collection was a founding stone of Cemcat and already in its initial years data were prospectively collected to build up the 3,500+ records from different individuals.
The dataset has been the basis of the Rio score and instrumental in defining the current diagnostic criteria for MS.
The AUBMC-Multiple Sclerosis Interdisciplinary Research (AMIR) is a single-center longitudinal prospective cohort that was initiated in 2012. Patients are recruited directly from the clinical practice, and followed longitudinally with standardized clinical exams every 6 months, annual or bi-annual MRIs, and quality of life questionnaires. Most patients opt to also participate in the blood, DNA, and urine biobank where blood and urine samples are collected yearly. Patients may also participate in the longitudinal optical coherence tomography (OCT) yearly measurements. Patients with all forms of MS (including CIS, RIS) and NMO patients are included in this cohort.