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2002
($25,000) Professional Education: The CPF directly funded the development of a manuscript New guidelines for diagnosing and managing the disease demand a fresh approach to nursing care, authored by Susan Jacobs, RM MS (Stanford University Medical Centers) and Kathleen Lindell, RN (Simmons Center @ UPMC) for publication in the American Journal of Nursing, a leading peer review publication for the critical care nursing community.
($40,000) The CPF directly funded the development, production and distribution of A Physician's Guide to IPF, a peer-reviewed educational tool to improve detection and diagnosis standards for IPF in the pulmonary community. The Physician's Guide was distributed to every US pulmonologist in 2003 and 2004
2003
($29,500) The CPF directly funded the development of a patient-centric Basic Research Questionnaire (funding continued through 2006, see below: total funding was $183,750 from 2003-2006). The guidelines were accepted for publication by Respiratory Medicine, a peer-review medical journal for the pulmonary community, in late 2006. The CPF continues to collect data on patients through its Web-based registration form. Click here to view the published research
2004
($243,072) Cerner Health Insights, a Division of Cerner Corp: . Cerner established a peer-review committee of IPF experts to assess the current standards of care being used to treat IPF in the clinic, and developed consensus recommendations for treatment across several stages of disease severity, from mild to severe IPF. The panel recommendations were accepted for publication by the Journal of Vasculitis, Sarcoidosis, and Diffuse Lung Diseases in 2005.
($69,250) Continued direct funding Michaels Opinion Research for continuation of Basic Research Questionnaire Program
($59,000) University of Michigan Health System gift:
- Phase I/II Clinical trial of tetrathiomolybdate (TM) in patients with IPF refractory to previous therapy - (Principal Investigator - Kevin R. Flaherty, M.D., MS)- could prevent rise of TGF-b in IPF
- Animal Model Study Examining the Role of Circulating Fibrocytes in the Pathogenesis of Pulmonary Fibrosis - (Principal Investigators - Bethany Moore, M.D. and Galen Toews, M.D.) - Results of study presented at 2006 annual meeting of the American Thoracic Society.
2005
($43,000) University of Chicago: clinic development, establishment of new study
- "Natural History of Interstitial Lung Diseases and IPF", The study aims to better describe the "phenotypic" expression of interstitial lung diseases, and specifically IPF. Following patients over time will allow investigators to track the natural history of these diseases, with special attention focused on: assessment of quality of life (QOL) questionnaires as predictors of physiological changes; assessment of response to various therapies; and surrogate physiological markers of mortality. The study will also assess if blood samples for later genetic analysis and genomics provide insight into the polymorphisms related to the etiology and pathology of the lung damage caused by IPF.
($59,000) David Geffen School of Medicine @ UCLA: Research gift was combined with existing funding from the National Institutes of Health (NIH) to fund the following three research programs from 2005 to present:
- Minocycline Treatment in Patients with IPF Being Treated with Standard of Care Therapy- a Pilot Study: The objective of this study is to establish the efficacy of minocycline as add-on therapy to the current American Thoracic Society (ATS) Consensus therapy (azathioprine or cyclophosphamide plus low dose prednisone) in patients with Idiopathic Pulmonary Fibrosis (IPF). This study completed enrollment and is currently undergoing data analysis as of 2/1/2007.
- Sildenafil Treatment in Patients with IPF and Pulmonary Hypertension- a Pilot Study: The objective of this study is to demonstrate that a single dose of sildenafil improves exercise capacity in patients with idiopathic pulmonary fibrosis (IPF) and pulmonary hypertension. We hypothesize that this drug will result in an increase in distance walked in subjects with IPF and pulmonary hypertension as compared with placebo. Details of the background and rationale for the study and the study protocol (study population, primary and secondary endpoints, study procedures, sample size estimates and planned statistical analysis) are available in www.clinicaltrials.gov. Preliminary results will be published: Collard HA, Anstrom KJ, Schwarz MI, Zisman DA. Sildenafil Improves Walk Distance in Idiopathic Pulmonary Fibrosis. Chest 2007 (in press).
- UCLA Interstitial Lung Disease Program Registry: The objective of this registry is to capture clinical, radiological and pathological data from all patients seen at the UCLA Interstitial Lung Disease Program. In addition to clinical and physiological data, all imaging studies and pathological specimens are being scored and incorporated into the database. We are using digital teleforms, which scan the collected data and export it to conventional databases. We are working with the statistical core in maintaining and setting up the database. One hundred and fifteen patients have been enrolled in this registry as of 01/12/07.
($46,000) Continued direct funding Michaels Opinion Research for continuation of Basic Research Questionnaire Program
($5,000) University of Minnesota Medical Foundation: Patient education and clinic support
($3,000) National Jewish Medical & Research Center: Patient education and clinic support
($5,000) Dorothy P. and Richard P. Simmons Center for the Study of Interstitial Lung Disease: Patient education and clinic support
($750) California Society of Pulmonary Rehabilitation: Speaker Sponsorship
2006
($71,000) University of Chicago:
($39,000) Michaels Opinion Research for continuation of Research Questionnaire. Aggregate data were accepted for publication by peer review journal Respiratory Medicine in late 2006. Click here to view the published research
($15,000) Unrestricted gift to University of California, San Francisco and Talmadge E. King, Jr., MD. Dr. King was the recipient of 2006 Marvin I. Schwarz Research Award in Pulmonary Fibrosis. The gift will be used to support the UCSF Center of Excellence in Interstitial Lung Disease, a cooperative clinical and research program focused on excellence in the evaluation, education, and clinical management of patients with fibrotic disorders of the lungs.
($25,000) 2006 ATS/CPF $100,000 partnered research award: initial payment toward two-year, $50,000 commitment to Sonye Danoff, MD to study "VEGF: Marker or mediator of lung injury in IPF?"
($2,500) University of Miami Medical Center: Patient education and clinic support
($2,500) National Jewish Medical & Research Center: Patient education and clinic support
($1,500) Johns Hopkins Department of Pulmonary & Critical Care Medicine: Patient education and clinic support
($500) Duke University Medical Center: Support for Familial Pulmonary Fibrosis Study with NIH
2007
($25,000) 2006 ATS/CPF partnered research award: final payment of two-year, $50,000 commitment to Danoff
($25,000) 2007 ATS/CPF $100,000 partnered research award: initial payment (awardee to be announced December 2007)
2008
($25,000) 2007 ATS/CPF partnered research award: final payment of two-year commitment to 2007 awardee
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