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Building Data Capacity for Patient-Centered Outcomes Research Interim Report 3 - A Comprehensive Ecosystem for PCOR (2022) / Chapter Skim
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6 Collaborations with Patient Groups
Pages 57-62

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From page 57...
... She discussed PPMD's work to develop a clinical trial master protocol and network for research on Duchenne muscular dystrophy, a rare progressive neuromuscular disease. She noted that other rare diseases face similar challenges related to research, so PPMD's goal is to create a framework that could be replicated.
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From page 58...
... Lewis noted that in regard to the outcomes research component of PCOR, a barrier of note is that while outcomes research routinely measures processes or clinical outcomes, patients may have different priorities for information. Lewis also discussed his experiences with the IBD Plexus program, which he described as a collection of ongoing and historical cohort studies from which they are working to build a centralized data warehouse.
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From page 59...
... Lewis concluded by highlighting the need to recognize the multidisciplinary nature of PCOR and the need for collaboration. Marc Natter, Harvard University, said that early in his career he encountered difficulties finding longitudinal data for PCOR focused on childhood arthritis due to inadequate registries and data infrastructure.
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From page 60...
... Many of these ideas echoed the committee's conclusions from the first workshop.1 CONCLUSIONS Collaborations with patient organizations can help in addressing ­ atient concerns about participating in research studies and in building p patient engagement, which are both important for achieving a patientcentered approach. Disease registries directed by patient groups can be a particularly useful additional source of data, providing information that would not be available to researchers otherwise.
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From page 61...
... COLLABORATIONS WITH PATIENT GROUPS 61 CONCLUSION 6-1: Patient groups can be helpful partners in all aspects of patient-centered outcomes research, including engaging pa tients in order to improve r­esearch participation and the impact of results. CONCLUSION 6-2: Patient-directed disease registries can be a source of in-depth, longitudinal, prospective clinical and patient-reported data that are not available from other data sources.
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Key Terms

  • claims data
  • data sharing
  • data infrastructure
  • data warehouse
  • outcomes research

  • clinical trial
  • trial master
  • master protocol
  • disease research
  • improve data

  • ehr data
  • rare disease
  • research studies
  • muscular dystrophy
  • carra registry

  • lewis noted
  • duchenne muscular
  • patient organizations
  • critical path
  • carra developed

  • james lewis
  • bowel disease
  • furlong concluded
  • presentations focused
  • national organization

  • link ehr
  • childhood arthritis
  • inadequate registries
  • researchers otherwise
  • failed clinical


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