Worldwide Sarcoidosis Research Study

NCT ID: NCT01610843

Last Updated: 2025-12-22

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

2200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2011-12-31

Study Completion Date

2025-10-31

Brief Summary

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The aim of this study is to collect information about the clinical course and characteristics of sarcoidosis patients around the world through web-based surveys. Recruitment is directed at and driven by patients in the sarcoidosis community. This will allow the the investigators to study sarcoidosis patients across all demographic, geographic, and socioeconomic boundaries, not just patients seen at large research centers. The investigators believe this study can give investigators a broader and less biased view of sarcoidosis. The investigators would also like to collect genetic samples on this population to assess genetic variance in different phenotypes.

The information for the study would be provided through a web based survey system that can be accessed by patients or physicians of patients from any computer with Internet access. This system would collect clinical information in sufficient detail so that the phenotype of individual patients can be evaluated. Upon agreeing to participate in further research studies through the website, subjects will also have the opportunity to provide a DNA sample.

Detailed Description

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Conditions

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Sarcoidosis

Keywords

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Sarcoidosis WISE Sarcoid Study Worldwide Sarcoidosis Research Study

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Interventions

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Survey

Longitudinal surveys

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Diagnosis of Sarcoidosis
* Access to a computer with Internet

Exclusion Criteria

* None
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Center for Research Resources (NCRR)

NIH

Sponsor Role collaborator

Alicia Gerke

OTHER

Sponsor Role lead

Responsible Party

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Alicia Gerke

Associate Professor; Division of Pulmonary, Critial Care and Occupational Medicine

Responsibility Role SPONSOR_INVESTIGATOR

Principal Investigators

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Alicia K Gerke, MD

Role: PRINCIPAL_INVESTIGATOR

University of Iowa

Locations

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University of Iowa

Iowa City, Iowa, United States

Site Status

Countries

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United States

References

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Statement on sarcoidosis. Joint Statement of the American Thoracic Society (ATS), the European Respiratory Society (ERS) and the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) adopted by the ATS Board of Directors and by the ERS Executive Committee, February 1999. Am J Respir Crit Care Med. 1999 Aug;160(2):736-55. doi: 10.1164/ajrccm.160.2.ats4-99. No abstract available.

Reference Type BACKGROUND
PMID: 10430755 (View on PubMed)

Baughman RP, Teirstein AS, Judson MA, Rossman MD, Yeager H Jr, Bresnitz EA, DePalo L, Hunninghake G, Iannuzzi MC, Johns CJ, McLennan G, Moller DR, Newman LS, Rabin DL, Rose C, Rybicki B, Weinberger SE, Terrin ML, Knatterud GL, Cherniak R; Case Control Etiologic Study of Sarcoidosis (ACCESS) research group. Clinical characteristics of patients in a case control study of sarcoidosis. Am J Respir Crit Care Med. 2001 Nov 15;164(10 Pt 1):1885-9. doi: 10.1164/ajrccm.164.10.2104046.

Reference Type BACKGROUND
PMID: 11734441 (View on PubMed)

Judson MA, Thompson BW, Rabin DL, Steimel J, Knattereud GL, Lackland DT, Rose C, Rand CS, Baughman RP, Teirstein AS; ACCESS Research Group. The diagnostic pathway to sarcoidosis. Chest. 2003 Feb;123(2):406-12. doi: 10.1378/chest.123.2.406.

Reference Type BACKGROUND
PMID: 12576358 (View on PubMed)

Yeager H, Rossman MD, Baughman RP, Teirstein AS, Judson MA, Rabin DL, Iannuzzi MC, Rose C, Bresnitz EA, DePalo L, Hunninghakes G, Johns CJ, McLennan G, Moller DR, Newman LS, Rybicki B, Weinberger SE, Wilkins PC, Cherniack R; ACCESS Research Group. Pulmonary and psychosocial findings at enrollment in the ACCESS study. Sarcoidosis Vasc Diffuse Lung Dis. 2005 Jun;22(2):147-53.

Reference Type BACKGROUND
PMID: 16053031 (View on PubMed)

Rybicki BA, Major M, Popovich J Jr, Maliarik MJ, Iannuzzi MC. Racial differences in sarcoidosis incidence: a 5-year study in a health maintenance organization. Am J Epidemiol. 1997 Feb 1;145(3):234-41. doi: 10.1093/oxfordjournals.aje.a009096.

Reference Type BACKGROUND
PMID: 9012596 (View on PubMed)

Judson MA, Baughman RP, Thompson BW, Teirstein AS, Terrin ML, Rossman MD, Yeager H Jr, McLennan G, Bresnitz EA, DePalo L, Hunninghake G, Iannuzzi MC, Johns CJ, Moller DR, Newman LS, Rabin DL, Rose C, Rybicki BA, Weinberger SE, Knatterud GL, Cherniak R; ACCESS Research Group. Two year prognosis of sarcoidosis: the ACCESS experience. Sarcoidosis Vasc Diffuse Lung Dis. 2003 Oct;20(3):204-11.

Reference Type BACKGROUND
PMID: 14620163 (View on PubMed)

Aranda A, Paramo JA, Rocha E. Fibrinolytic activity in plasma after gynecological and urological surgery. Haemostasis. 1988;18(2):129-34. doi: 10.1159/000215794.

Reference Type BACKGROUND
PMID: 3137141 (View on PubMed)

Rabin DL, Thompson B, Brown KM, Judson MA, Huang X, Lackland DT, Knatterud GL, Yeager H Jr, Rose C, Steimel J. Sarcoidosis: social predictors of severity at presentation. Eur Respir J. 2004 Oct;24(4):601-8. doi: 10.1183/09031936.04.00070503.

Reference Type BACKGROUND
PMID: 15459139 (View on PubMed)

Clark RE, McKnight RC, Kissane JM, Weldon CS. Experimentally reversed pulmonary blood flow. Implications for the surgical management of complex forms of congenital heart disease. Ann Thorac Surg. 1975 Oct;20(4):433-45. doi: 10.1016/s0003-4975(10)64241-5.

Reference Type BACKGROUND
PMID: 1180597 (View on PubMed)

Related Links

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http://www.sarcoidstudy.org

Worldwide Sarcoidosis Research Study

Other Identifiers

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5UL1RR024979

Identifier Type: NIH

Identifier Source: secondary_id

View Link

200907757

Identifier Type: -

Identifier Source: org_study_id