Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2014 Nov;26(6):724-41.
doi: 10.1097/BOR.0000000000000119.

Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research

Lisa G Rider  1 , Katalin Dankó, Frederick W Miller
Affiliations
Review

Myositis registries and biorepositories: powerful tools to advance clinical, epidemiologic and pathogenic research

Lisa G Rider et al. Curr Opin Rheumatol. 2014 Nov.

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.

PubMed Disclaimer

Conflict of interest statement

The authors do not have any conflicts of interest related to this work.

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Huber AM, Mamyrova G, Lachenbruch PA, Lee JA, Katz JD, Targoff IN, Miller FW, Rider LG. Early Illness Features Associated with Mortality in the Juvenile Idiopathic Inflammatory Myopathies. Arthritis Care Res (Hoboken) 2014;66:732–740. The aim of this work was to examine the risk factors for mortality in juvenile myositis patients. The authors found that the overall mortality was higher in juvenile myositis patients. The importance of the study is that they also identified the top mortality risk factors: antisynthetase autoantibodies, older age at disease onset, interstitial lung disease, and Raynaud’s phenomenon. - PMC - PubMed
    1. Hashkes PJ, Wright BM, Lauer MS, Worley SE, Tang AS, Roettcher PA, Bowyer SL. Mortality outcomes in pediatric rheumatology in the US. Arthritis Rheum. 2010;62:599–608. - PubMed
    1. Ohta A, Nagai M, Nishina M, Tomimitsu H, Kohsaka H. Age at onset and gender distribution of systemic lupus erythematosus, polymyositis/dermatomyositis, and systemic sclerosis in Japan. Mod Rheumatol. 2013;23:759–764. The aim of this study was to summarize the distribution of gender and age at disease onset. The epidemiological data of more than 6000 patients with polymyosittis or dermatomyositis were analyzed. - PubMed
    1. Bohan A, Peter JB, Bowman RL, Pearson CM. Computer-assisted analysis of 153 patients with polymyositis and dermatomyositis. Medicine (Baltimore) 1977;56:255–286. - PubMed
    1. Love LA, Leff RL, Fraser DD, Targoff IN, Dalakas M, Plotz PH, Miller FW. A new approach to the classification of idiopathic inflammatory myopathy: myositis-specific autoantibodies define useful homogeneous patient groups. Medicine (Baltimore) 1991;70:360–374. - PubMed

Publication types

  NODES
INTERN 3
twitter 2