Serial Collection of Primary Progressive Multiple Sclerosis Participants in the MURDOCK Study
Condition: Primary Progressive Multiple Sclerosis
MeSH terms: Multiple Sclerosis; Multiple Sclerosis, Chronic Progressive; Sclerosis
Study type: Observational

Summary: 
      The goal of this study is to enroll 100 participants with Primary Progressive Multiple
      Sclerosis (PPMS) that have joined the MURDOCK Study Horizon 1.5 (Duke IRB Pro00011196) and
      the Multiple Sclerosis cohort (Duke IRB Pro00023791). All 100 participants will complete a
      biannual collection of a follow up questionnaire and blood/urine collection for a period of 5
      years.
    

Detailed description: 
      Unlike Relapsing Remitting Multiple Sclerosis (RRMS) or Secondary Progressive Multiple
      Sclerosis (SPMS) in which patients experience a remission or lessening of their symptoms,
      Primary Progressive Multiple Sclerosis (PPMS) is characterized by progression of disability
      from onset, with no, or only occasional and minor, remissions and improvements. The age of
      onset for the primary progressive subtype is later than for the relapsing-remitting, but
      similar to mean the age of progression between the relapsing-remitting and the secondary
      progressive - around 40 years of age. Because of its prevalence, RRMS represents the largest
      basis for basic and clinical MS research. Therefore, drugs have primarily been developed to
      slow disease progression in RRMS and SPMS patients. No treatment has been proven successful
      in treating primary progressive MS.

      The MURDOCK-MS collection represents a unique opportunity to carry out detailed biomarker
      research on PPMS patients and, to the knowledge of this investigator and his colleagues in
      the field, would represent an exceptional cohort that is not available elsewhere in the US or
      the rest of the world. Aside from first in disease sampling, the serial, biannual collection
      of samples from PPMS patients would not only permit the identification of 'omic profiles that
      can be compared and contrasted to those from RRMS patients in a parallel study, but it would
      also allow the generation of 'omic markers of disease progression. This progressive etiology
      would provide valuable insight into PPMS development and may also shed light on SPMS
      progression.
    

Intervention name(s): generation of 'omic markers of disease progression
Intervention type(s): Other
Intervention description(s): Aside from first in disease sampling, the serial, biannual collection of samples from PPMS patients would not only permit the identification of 'omic profiles that can be compared and contrasted to those from RRMS patients in a parallel study, but it would also allow the generation of 'omic markers of disease progression.
Observational model: Cohort
Time perspective: Other
Sampling method: Non-Probability Sample
Study population: 
        Participants must enroll in the MURDOCK Study Horizon 1.5 (Pro00011196) as well as the
        Multiple Sclerosis cohort (Pro00023791) in order to participate in this biannual collection
        of a follow up questionnaire and blood/urine collection for participants who have Primary
        Progressive MS. The biannual collection will continue for 5 years. Those participants with
        PPMS who are already enrolled in the MURDOCK Study Horizon 1.5 and Multiple Sclerosis
        cohort will be contacted via phone to assess interest in the PPMS study. New participants
        with PPMS who enroll into the Horizon 1.5 study and Multiple Sclerosis cohort will be asked
        during the time of enrollment if they would like to participate in the PPMS study as well.
      
Biospecimen description: 
      Blood (RNA/DNA), serum, plasma, urine
    
Keywords: Primary Progressive Multiple Sclerosis; Multiple Sclerosis; biomarker; 'omic; progression