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ALPHA-1 FOUNDATION

Program Overview

PUBLISHED ARTICLES FROM REGISTRY RESEARCH

Olfert IM, Malek MH, Eagan TM, Wagner H, Wagner PD. Inflammatory cytokine response to exercise in alpha-1-antitrypsin deficient COPD patients 'on' or 'off' augmentation therapy. BMC Pulm Med. 2014 Jun 30;14:106. PMID: 24975928

Hoth KF, Wamboldt FS, Ford DW, Sandhaus RA, Strange C, Bekelman DB, Holm KE. The social environment and illness uncertainty in chronic obstructive pulmonary disease. International Journal of Behavioral Medicine 2014 (in press).

Williams PH, Shore L, Sineath M, Quill J, Warner B, Keith J, Walker D, Wienke S, Flavin S, Strange C. Genetics' influence on patient experiences with a rare chronic disorder: a photovoice study of living with alpha-1 antitrypsin deficiency. Nurs Clin North Am. 2013 Dec;48(4):627-36. PMID 24295190.

Smith, R. A., Wienke, S. E., & Coffman, D. L. Alpha-1 couples: Interpersonal and intrapersonal predictors of spousal communication and stress. J Genet Couns. 2013 Aug 11. PMID: 23934327                                                                                             

Smith, R. A., Wienke, S. E., & Baker, M. B.  Classifying married adults diagnosed with alpha-1 antitrypsin deficiency based on spousal communication patterns using latent class analysis: Insights for Intervention.  2013 Nov Journal of Genetic Counseling. doi: 10.1007/s10897-013-9661-8      

Williams PH, Strange C. Assessing Community Engagement Factors to Support Individuals Impacted by a Rare Disease: Alpha-1 Antitrypsin Deficiency. Internet J Advanced Nursing Practice 2013, in press.

Holm KE, Wamboldt FS, Ford DW, Sandhaus RA, Strand M, Strange C, Hoth KF. Prospective Association of Perceived Criticism with Dyspnea in Chronic Lung  Disease. J Psychosomatic Research 2013, 74: 450-453

Holm KE, Borson S, Sandhaus RA, Ford DW, Strange C, Bowler RP, Make BJ, Wamboldt FS. Differences in Adjustment between Individuals with Alpha-1 Antitrypsin Deficiency (AATD) Associated COPD and Non-AATD COPD. J COPD, April 2013, Vol. 10, No. 2 Pages 226-234.

Hoth KF, Holm KE, Ford DW, Wamboldt FS, Strange C, Strand S, Sandhaus RA. Prospective Impact of Illness Uncertainty on Outcomes in Chronic Lung Disease. Health Psychology 2013; 32(11):1170-4. PMID 23772888.

Hoth KF, Ford DW, Sandhaus RA, Strange C, Wamboldt FS, Kristen KE. Alcohol Use Predicts ER Visits in Individuals with Alpha-1 Antitrypsin Deficiency (AATD) Associated COPD. J Chronic Obstuctive Pulm Dis 2012, 9:1-9. PMID 22651849.

Carpenter MJ, Strange C, Jones Y, Dickson MR, Carter C, Moseley MA, Gilbert GE. Does genetic testing result in behavioral health change? Changes in smoking behavior following testing for Alpha-1 Antitrypsin Deficiency. Ann Behav Med, 2007, 33(1):22-28.

Eden E, Holliday B, Xie L, Strange C. Asthma and allergy in alpha-1 antitrypsin deficiency. Respiratory Medicine, 2006; 100(8):1384-91.

Strange C, Moseley MA, Jones Y, Schwarz L, Xie L, Brantly ML. Genetic testing of minors for alpha-1 antitrypsin deficiency, Arch Pediatr Adolesc Med 2006, 160:531-4.

Bowlus C, Strange C, Willner I, Reuben A, Xie L, Woolson R, Holladay B. Factors associated with advanced liver disease in adults with alpha1-antitrypsin deficiency. Clinical Gastroenterology and Hepatology 2005, 3(4):390-6. 

Fanos JH, Strange C. “The lion, the witch, and the wardrobe": impact of siblings of individuals with AAT deficiency. American J Medical Genetics 2004, 130(3):251-7.

Strange C, Dickson M, Carter C, Carpenter MJ, Holladay, Lundquist R, Brantly ML. Genetic testing for alpha1-antitrypsin deficiency. Genet Med 2004, 6: 204-10.

Mullins CD, Wang J, Stoller JK.  Major components of the direct medical costs of alpha1-antitrypsin deficiency.  Chest 2003, 124(3):826-31.

Strange C, Wilner I.  Alpha-1 Foundation Research Registry: from the past to the future.  J Ped Gastro and Nutrition 2002, 34:1.

Mayer AS, Stoller JK, Bucher Bartelson B, James Ruttenber A, Sandhaus RA, Newman LS.  Occupational exposure risks in individuals with PI*Z alpha (1)-antitrypsin deficiency.  Am J Respir Crit Care Med 2000, 162(2 Pt 1):553-8.

PUBLISHED ARTICLES FROM RESEARCH ADVERTISED THROUGH THE REGISTRY

Campos MA, Kueppers F, Stocks JM, Strange C, Chen J, Griffin R, Wang-Smith L, Brantly ML. Safety and pharmacokinetics of 120 mg/kg versus 60 mg/kg weekly intravenous infusions of alpha-1 protease inhibitor in alpha-1 antitrypsin deficiency: a multicenter, randomized, double-blind , crossover study (SPARK). COPD 2013. 10(6):687-95. PMID 23862647.

Mueller C, Flotte TR. Gene-bases therapy for alpha-1 antitrypsin deficiency.  COPD 2013 Mar; 10 Suppl 1:44-9 PMID: 23527792

Tan L, Dickens J, DeMeo DL, Miranda E, Perez J, Rashid ST, Day J, Ordoñez A, Marciniak SL, Haq I, Barker AF, Campbell EJ, Eden E, McElvaney NG, Rennard SI, Sandhaus RA, Stocks JM, Stoller JK, Strange C, Turino G, Rouhani F, Brantly M, Lomas DA. Circulating polymers in α1-antitrypsin deficiency. Eur Resp J 2013, in press.

Siedlinski M, Klanderman B, Sandhaus RA, Barker AF, Brantly ML, Eden E, McElvaney G, Rennard SI, , Stocks JM, Stoller JK, Strange C, Turino G, Campbell EJ, DeMeo DL. Association of cigarette smoking and CRP levels with DNA methylation in Alpha-1 Antitrypsin Deficiency. Epigenetics 2012, 7(7):720-8. PMID 22617718.

Flotte TR, Trapnell BC, Humphries M, Carey B, Calcedo R, Rouhani F, Campbell-Thompson M, Yachnis AT, Sandhaus RA, McElvaney NG, Mueller C, Messina LM, Wilson JM, Brantly M, Knop DR, Ye GJ, Chulay JD. Phase 2 clinical trial of a recombinant adeno-associated viral vector expressing α1-antitrypsin: interim results. Hum Gene Ther. 2011 Oct;22(10):1239-47.

Holm KE, Bowler RP, Make BJ, Wamboldt FS.  Family relationship quality is associated with psychological distress, dyspnea, and quality of life in COPD.  COPD, 2009 6(5):359-68.

DeMeo DL, Campbell EJ, Barker AF, Brantly ML, Edward Eden E, McElvaney NG, Rennard S, Sandhaus RA, Stocks JM, Stoller JK, Strange C, Turino GM, , Silverman EK. IL10 polymorphisms are associated with airflow obstruction in severe alpha 1-antitrypsin deficiency. Am J Respir Cell Mol Biol; 2008, 38:114-20.

DeMeo DL, Sandhaus RA, Barker AF, Brantly ML, Edward Eden E, McElvaney NG, Rennard S, Burchard E, Stocks JM, Stoller JK, Strange C, Turino GM, Campbell EJ, Silverman EK. Determinants of airflow obstruction in severe alpha 1-antitrypsin deficiency. Thorax 2007,
62(9): 806-13.

Stocks JM, Brantly M, Barker A, Kueppers F, Strange C, Donohue JF, Sandhaus R. Multi-center study: the biochemical efficacy, safety and tolerability of a new alpha-1-proteinase inhibitor, Zemaira. Journal of COPD, 2006,3:17-23.

 

Last Updated: June 18, 2014

 
 
 

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