Click on the video above to hear a message from
our Medical Director, Dr. Robert A. Sandhaus.

For over 20 years, AlphaNet, Inc. has been leading the way in funding research to find a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) with over $51 Million contributed to the cause.

Below are several research studies sponsored by AlphaNet as we look to improve your health and find a cure for Alpha-1.

Learn more about each study results below by clicking on the underlined titles to take you to the links:

  1. Does COPD Have a Genetic Component? –  Is it possible for someone to be genetically predisposed to have Chronic Obstructive Pulmonary Disease (COPD)? In an article published by the US News & World Report on June 2, 2017 under the health care section, this very topic was address. Of interest is the discussion about Alpha-1 Antitrypsin Deficiency and its impact on developing COPD.
  2. Benefits Among Patients with Alpha-1 Antitrypsin Deficiency Enrolled in a Disease Management and Prevention Program – The results of this research study suggests that adherence to the Alpha-1 Disease Management and Prevention Program (ADMAPP) may be a useful tool for informing and improving preventive measures taken by individuals with Alpha-1 Antitrypsin Deficiency.  This was published in the Vol. 4 | No. 1 | 2017 edition of the Journal of COPD Foundation.
  3. The PELICAN Study – This research study tests whether oxygen (O2 infoline) for patients and caregivers will increase supplemental oxygen adherence and improve health in people with COPD.
  4. Differences Between ZZ and SZ patients on the AlphaNet Program– A poster presented at the American Thoracic Society annual scientific meeting in May 2016 comparing the clinical course of AlphaNet patients with the ZZ genotype to those with the SZ genotype.
  5. Improving Survival among ZZ patients in the AlphaNet Program – A poster presented at the American Thoracic Society annual scientific meeting in May 2016 documenting the dramatic improvements in survival for those patients followed by AlphaNet compared with those not receiving augmentation therapy.
  6. Clinical Practice Guidelines: The Diagnosis and Management of Alpha-1 Antitrypsin Deficiency in the Adult – These guidelines were created to provide recommendations for: (1) the performance and interpretation of diagnostic testing for AATD, and (2) the current management of adults with AATD and its associated medical conditions. They were published in the July 2016 edition of the Journal of COPD Foundation.
  7. Intravenous augmentation treatment and lung density in severe alpha-1 antitrypsin deficiency (RAPID): a randomised, double-blind, placebo-controlled trial – The results of this research study, published on Lancet in May 2015, found that the measurement of lung density with a CT scan at total lung capacity (TLC) alone provided evidence that intravenous augmentation therapy slows progression of emphysema.
  8. American Thoracic Society/European Respiratory Society Statement: Standard for the Diagnosis and Management of Individuals with Alpha-1 Antitrypsin Deficiency  –  This document provides the recommended standards for the diagnosis and management of Alpha-1 Antitrypsin Deficiency (AATD) including clinical recognitions of AATD, genetic testing for AATD, liver disease, general management of obstructive lung disease and the efficacy of augmentation therapy.  It was developed by the Alpha-1 Antitrypsin Deficiency Task Force of the Clinical Problems Assembly and approved by the American Thoracic Society and the European Respiratory Society who published it the American Journal of Respiratory and Critical Care Medicine on  October 1, 2003.

Books and Posters

  1. Alpha-1 Antitrypsin: Role in Health and Disease; Adam Wanner and Robert A. Sandhaus eds., Respiratory Medicine, Springer International Publishing AG, Switzerland (2016).
  2. Survival Improvements in Alpha-1 Antitrypsin Deficiency – a poster presented from Dr. Robert A. Sandhaus, MD, PHD and Healther Van Duker, MS showing the difference that AlphaNet’s Alpha-1 Disease Management and Prevention (ADMAP) program has made in the longevity of Alpha-1 individuals enrolled in this program. (2011)

Medical Journal Articles

  1. Perkins JT, Choate R, Mannino DM, Browning SR, Sandhaus RA. Benefits Among Patients with Alpha-1 Antitrypsin Deficiency Enrolled in a Disease Management and Prevention Program. JCOPDF 4(1): 56-64 (2017).
  2. Shuren M, Lin YY, Cantor JO, Chapman KR, Sandhaus RA, Fries M, Edelman JM, McElvaney MG, Turino GM: The Effects of Alpha-1 Proteinase Inhibitor on Biomarkers of Elastin Degradation in Alpha-1 Antitrypsin Deficiency: An Analysis of the RAPID/RAPID Extension Trails. JCOPDF 4:34-44 (2017).
  3. Sandhaus RA: Randomized, Placebo-Controlled Trials in Alpha-1 Antitrypsin Deficiency.  Ann Am Thorac Soc 13 Suppl 4:S370-373 (2016).
  4. Holm KE, Casaburi R, Cerreta S, Gussin HA, Husbands J, Porszasz J, Prieto-Centurion V, Sandhaus RA, Sullivan JL, Walsh LJ, Krishnan JA: Patient Involvement in the Design of a Patient-Centered Clinical Trial to Promote Adherence to Supplemental Oxygen Therapy in COPD. Patient 9:271-279 (2016).
  5. Sandhaus RA, Turino G, Brantly ML, Campos M, Cross CE, Goodman K, Hogarth DK, Knight SL, Stocks JM, Stoller JK, Strange C, Teckman J: Clinical Practice Guidelines: The diagnosis and management of alpha-1 antitrypsin deficiency in the adult. JCOPDF 3:668-682 (2016).
  6. 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. Int J Behav Med 22:223-232 (2015).
  7. Chapman KR, Burdon JG, Piitulainen E, Sandhaus RA, Seersholm N, Stocks JM, Stoel BC, Huang L, Yao Z, Edelman JM, McElvaney NG, and RTS Group: Intravenous augmentation treatment and lung density in severe alpha-1 antitrypsin deficiency (RAPID): a randomised, double-blind, placebo-controlled trial. Lancet 386:360-368 (2015).
  8. Strange C, Senior RM, Sciurba F, O’Neal S, Morris A, Wisniewski SR, Bowler R, Hochheiser HS, Becich MJ, Zhang Y, Leader JK, Methe BA, Kaminski N, Sandhaus RA, and GRADS Study Group: Rationale and design of the Genomic Research in Alpha-1 Antitrypsin Deficiency and Sarcoidosis study: Alpha-1 protocol. Ann Am Thorac Soc 12:1551-1560 (2015).
  9. Sandhaus R, Knebel AR: Editorial: Might your respiratory patient have alpha-1 antitrypsin deficiency? Heart Lung 44:463-464 (2015).
  10. Wanner A, Groft SC, Teagarden JR, Krischer J, Davis BR, Coffey CS, Hickam DH, Teckman J, Nelson DR, McCaleb ML, Loomba R, Strange C, Sandhaus RA, Brantly M, Edelman JM, Farrugia A: Clinical trial design for alpha-1 antitrypsin deficiency: a model for rare diseases. JCOPDF 2:177-190 (2015).
  11. Hoth KF, Ford DW, Sandhaus RA, Strange C, Wamboldt FS, Holm KE: Alcohol Use Predicts ER Visits in Individuals with Alpha-1 Antitrypsin Defi ciency (AATD) Associated COPD. JCOPD 9:1-9 (2012)
  12. Campos MA, Alazemi S, Zhang G, Wanner A, Salathe M, Baier H, Sandhaus RA: Exacerbations in subjects with alpha-1 antitrypsin deficiency receiving augmentation therapy.  j.rmed 103:1532-1539 (2009)
  13. Silverman EK, Sandhaus RA: Alpha1-Antitrypsin Deficiency. N Engl J Med 360:2749-2757 (2009)
  14. Campos MA, Alazemi S, Zhang G, Salathe M, Wanner A, Sandhaus RA, Baier H: Clinical Characteristics of Subjects With Symptoms of α1-Antitrypsin Deficiency Older Than 60 Years*. CHEST 135 (3):600-608 (2009)
  15. Sandhaus RA: Editorial: Augmentation Therapy in Alpha-1 Antitrypsin Deficiency. JCOPD 6:147-148 (2009)
  16. Campos MA, Alazemi S, Zhang G, Wanner A, Sandhaus RA: Effects of a Disease Management Program in Individuals with Alpha-1 Antitrypsin Deficiency. JCOPD 6: 31-40 (2009)
  17. Sandhaus RA, Turino G, Stocks J, Strange C, Trapnell B, Silverman E, Everett SE, Stoller JK, and Scientific Advisory Cmte Alpha-1 Foundation: Clinical Commentary: α1-Antitrypsin Augmentation Therapy for PI*MZ Heterozygotes*: A Cautionary Note. CHEST 134(4): 831-834 (2008)
  18. Campos M. Alazemi S, Zhang G, Sandhaus RA, Wanner A: Influenza Vaccination in Subjects With α1-Antitrypsin Deficiency*. CHEST 133(1):49-55 (2008)
  19. Mayer AS, Stoller JK, Vedal S, Ruttenber AJ, Strand M, Sandhaus RA, Newman LS: Risk factors for symptom onset in PI*Z alpha-1 antitrypsin deficiency. JCOPD 1(4): 485-492 (2007)
  20. Sandhaus RA: Editorial: Alpha-1 Antitrypsin Deficiency: Doing the Right Thing (or Start Kissing Those Frogs). JCOPD 3:123-124 (2006)
  21. Stoller JK, Sandhaus RA, Turino G, Dickson R, Rodgers K, Strange C: Delay in Diagnosis of α1-Antitrypsin Deficiency*: A Continuing Problem. CHEST 128(4): 1989-1994 (2005)
  22. Campos MA, Wanner A, Zhang G, Sandhaus RA: Trends in the Diagnosis of Symptomatic Patients With α1-Antitrypsin Deficiency Between 1968 and 2003*. CHEST 128(3): 1179-1186 (2005)
  23. American Thoracic Society/European Respiratory Society Statement: Standard for the Diagnosis and Management of Individuals with Alpha-1 Antitrypsin Deficiency. American Journal of Respiratory and Critical Care Medicine 168(7): 818–900 (2003)
  24. Sandhaus RA: Editorial: α1-Antitrypsin Deficiency Therapy:  Pieces of the Puzzle. CHEST 119(3): 676-677 (2001)
  25. Mayer AS, Stoller JK, Bartelson BB, Ruttenber AJ, Sandhaus RA, Newman LS: Occupational Exposure Risks in Individuals with PI*Z α1-Antitrypsin Deficiency. Am J Respir Crit Care Med 162: 553-558 (2000)