Clinical trial NCT01610843: Worldwide Sarcoidosis Research Study
Official title: Worldwide Sarcoidosis Research Study
Study type: OBSERVATIONAL
Overall status: ACTIVE_NOT_RECRUITING
Conditions: Sarcoidosis
Keywords: Sarcoidosis
WISE
Sarcoid Study
Worldwide Sarcoidosis Research Study
Lead sponsor: University of Iowa
Sponsor class: OTHER
Collaborators: name: National Center for Research Resources (NCRR)
First posted: 2012-06-04
Enrollment: 10000
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Individuals diagnosed with sarcoidosis who have a computer with Internet access.

Brief summary: 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.


Eligibility criteria: Inclusion Criteria:

* Diagnosis of Sarcoidosis
* Access to a computer with Internet

Exclusion Criteria:

* None

Primary outcomes:
measure: Define and characterize sarcoidosis phenotypes and methods of care
timeFrame: Anticipated by 2017
Secondary outcomes:
Other outcomes:
Locations:
city: Iowa City
country: United States
facility: University of Iowa
state: Iowa
Study officials:
affiliation: University of Iowa
name: Alicia K Gerke, MD
role: PRINCIPAL_INVESTIGATOR
References:
citation: 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.
citation: 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.
citation: 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.
citation: 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.
citation: 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.
citation: 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.
citation: 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.
citation: 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.
citation: 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.