Myositis registries and biorepositories

Powerful tools to advance clinical, epidemiologic and pathogenic research

Lisa G. Rider, K. Dankó, Frederick W. Miller

Research output: Contribution to journalArticle

12 Citations (Scopus)

Abstract

Purpose of review: 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. Recent findings: 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. Summary: 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.

Original languageEnglish
Pages (from-to)724-741
Number of pages18
JournalCurrent Opinion in Rheumatology
Volume26
Issue number6
DOIs
Publication statusPublished - 2014

Fingerprint

Myositis
Registries
Research
Self-Help Groups
Research Personnel
Cost of Illness
Rare Diseases
Autoimmune Diseases
Demography
Outcome Assessment (Health Care)
Phenotype
Therapeutics

Keywords

  • Biorepository
  • Dermatomyositis
  • Idiopathic inflammatory myopathies
  • Inclusion body myositis
  • Juvenile dermatomyositis
  • Myositis autoantibody
  • Natural history
  • Phenotype
  • Polymyositis
  • Registry

ASJC Scopus subject areas

  • Rheumatology
  • Medicine(all)

Cite this

Myositis registries and biorepositories : Powerful tools to advance clinical, epidemiologic and pathogenic research. / Rider, Lisa G.; Dankó, K.; Miller, Frederick W.

In: Current Opinion in Rheumatology, Vol. 26, No. 6, 2014, p. 724-741.

Research output: Contribution to journalArticle

@article{5969c5a3c42f423f81c0e3b12ddaef90,
title = "Myositis registries and biorepositories: Powerful tools to advance clinical, epidemiologic and pathogenic research",
abstract = "Purpose of review: 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. Recent findings: 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. Summary: 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.",
keywords = "Biorepository, Dermatomyositis, Idiopathic inflammatory myopathies, Inclusion body myositis, Juvenile dermatomyositis, Myositis autoantibody, Natural history, Phenotype, Polymyositis, Registry",
author = "Rider, {Lisa G.} and K. Dank{\'o} and Miller, {Frederick W.}",
year = "2014",
doi = "10.1097/BOR.0000000000000119",
language = "English",
volume = "26",
pages = "724--741",
journal = "Current Opinion in Rheumatology",
issn = "1040-8711",
publisher = "Lippincott Williams and Wilkins",
number = "6",

}

TY - JOUR

T1 - Myositis registries and biorepositories

T2 - Powerful tools to advance clinical, epidemiologic and pathogenic research

AU - Rider, Lisa G.

AU - Dankó, K.

AU - Miller, Frederick W.

PY - 2014

Y1 - 2014

N2 - Purpose of review: 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. Recent findings: 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. Summary: 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.

AB - Purpose of review: 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. Recent findings: 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. Summary: 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.

KW - Biorepository

KW - Dermatomyositis

KW - Idiopathic inflammatory myopathies

KW - Inclusion body myositis

KW - Juvenile dermatomyositis

KW - Myositis autoantibody

KW - Natural history

KW - Phenotype

KW - Polymyositis

KW - Registry

UR - http://www.scopus.com/inward/record.url?scp=84927794642&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84927794642&partnerID=8YFLogxK

U2 - 10.1097/BOR.0000000000000119

DO - 10.1097/BOR.0000000000000119

M3 - Article

VL - 26

SP - 724

EP - 741

JO - Current Opinion in Rheumatology

JF - Current Opinion in Rheumatology

SN - 1040-8711

IS - 6

ER -