WISE: Worldwide Sarcoidosis Research Study
Study Details
Study Description
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.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
|
Study Design
Outcome Measures
Primary Outcome Measures
- Define and characterize sarcoidosis phenotypes and methods of care [Anticipated by 2017]
To give a broader and less biased view of sarcoidosis
Eligibility Criteria
Criteria
Inclusion Criteria:
-
Diagnosis of Sarcoidosis
-
Access to a computer with Internet
Exclusion Criteria:
- None
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | University of Iowa | Iowa City | Iowa | United States | 52242 |
Sponsors and Collaborators
- University of Iowa
- National Center for Research Resources (NCRR)
Investigators
- Principal Investigator: Alicia K Gerke, MD, University of Iowa
Study Documents (Full-Text)
None provided.More Information
Additional Information:
Publications
- Aranda A, Páramo JA, Rocha E. Fibrinolytic activity in plasma after gynecological and urological surgery. Haemostasis. 1988;18(2):129-34.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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. Review.
- 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. Review.
- 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.
- 200907757
- 5UL1RR024979