title: Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research.
abstract: OBJECTIVE
  Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers' collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here, we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes.
  
  
  RESULTS
  We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation.
  
  
  CONCLUSIONS
  Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways.
authors.affiliation: aEnvironmental Autoimmunity Group, Program of Clinical Research, National Institute of Environmental Health Sciences, National Institutes of Health (NIH), DHHS, Bethesda, Maryland, USA bDivision of Immunology, 3rd Department of Internal Medicine, Medical and Health Science Center, University of Debrecen, Debrecen, Hungary.
authors.forename: Lisa G
authors.initials: LG
authors.lastname: Rider
authors.forename: Katalin
authors.initials: K
authors.lastname: Dankó
authors.forename: Frederick W
authors.initials: FW
authors.lastname: Miller
mesh_terms: D006801:Humans; D009220:Myositis / Q000453:epidemiology* / Q000628:therapy*; D017063:Outcome Assessment, Health Care; D011379:Prognosis; D012042:Registries; D012307:Risk Factors; D012720:Severity of Illness Index