MUSC Alpha-1 Newsletters

2016 summer

Registry Update Summer 2016

Learn more about some new studies, and ways to cut infections.
Summer 2016

Winter 2015

Registry Update Winter 2015

Learn more about Dr. Stoller and his work at the Cleveland Clinic in this issue of the Alpha-1 Research Registry Update. There are also updates on clinical trial recruitments such as the MZ COPD Study, improved detection in the ACT study with the addition of F and I alleles, and why you shouldn’t give up on exercise.
Winter 2015

Summer 2015

Registry Update Spring 2015

A NEW website, new study opportunities for Alphas who are liver affected and even a crossword puzzle are some of the articles you will find in this edition of the Alpha-1 Research Registry Update. Also learn about 'Precision Medicine' and more about biorepositories.
Spring 2015

Fall 2014

Registry Update Fall 2014

In this edition, liver disease studies are highlighted.  Meet Larnetta Jones, an African American with Alpha-1.  The impact of exercise on systemic inflammation and highlights of recent studies on lung disease risk in MZ carriers are discussed.
Fall 2014

Fall 2013

Registry Update Fall 2013

In this edition our CRC highlight is the Boston Medical Center, featuring Dr Andrew Wilson and Dr Darrell Kotton. You can learn more about the GRADS Study and the MESA-COPD/Alpha-1 Study. Read articles about the newest clinical resource centers, the S allele, how marriage has an impact on Alpha's and more in this edition. 
Fall 2013

Winter 2013

Registry Update Winter 2013

In this edition our CRC highlight is Ohio State University, featuring Dr Mark Wewers. You can learn more about the Carbamazepine Study, focusing on improving liver disease in Alphas. Get to know Gunilla Bowling and how she's helped with Alpha-1 research, or learn more about preconception genetic testing concerns in this edition. 
Winter 2013

Spring 2012

Registry Update Spring 2012

In this edition you can learn more about the future of the Alpha-1 Research Registry, read two student perspectives on Alpha-1, find out more about the Alpha-1 Community Based Partnership Research group and what your Alpha genotype means for your future.
Spring 2012

Spring 2011

Registry Update Spring 2011

Celebrate 10,000 Alphas tested through the Alpha Coded Testing Study! This issue highlights the University of Iowa and Dr. Michael Voigt and Dr. Dawn Ebach's focus on educating young physicians about Alpha-1. Get the scoop on raising Alpha-1 awareness and find out more about donating your tissues for research. 
Spring 2011

Summer 2010

Registry Update Summer 2010

Are your muscles wasting? Learn how one-limb exercises make it easier to build strength. Read about gene transfer trials, the NIH helping research registries for rare diseases and how you can be an MUSC hero all in this edition of the Registry Update.
Summer 2010

Winter 2009

Registry Update Winter 2009

Become acquainted with three clinical resource centers located in Chicago in this issue of the Registry Update. You can improve your knowledge about testing with our feature article about testing after liver transplantation. Also included is a discussion about new born screening, healthcare reform, and how you can make a difference with the Alpha-1 Foundation's Building Friends for a Cure (BFC) program.  
Winter 2009

Fall 2009

Registry Update Fall 2009

This is a special edition of the Registry that was mailed with Alpha-1-to-One and highlights the Registry as a program of the Alpha-1 Foundation. St Louis University and Dr. Jeffery Teckman and his research on Alpha-1 liver disease are highlighted, as well as the PiSS Genotype Study and you can get personal with four generations of an Alpha-1 family.
Fall 2009

Spring 2008

Registry Update Spring 2008

Discover how the University of Minnesota is raising public awareness and furthering COPD research in our featured CRC highlight. Find out more about rare Alpha-1 genes, gets answers to your questions from Dr. Wendt in our Ask the Alpha Doc article, and meet Dawn McGee the first Alpha-1 genetic counselor. 
Spring 2008

Spring 2007

Registry Update Spring 2007

Learn more about being an empowered patient, guidance for the Alpha-1 parent, whether augmentation therapy should be used after a lung transplant, advice on understanding COPD, panniculitis in Alpha-1 and more in this issue of the Research Registry Update.
Spring 2007

Fall 2006

Registry Update Fall 2006

Read all about research endeavors supported by the Alpha Foundation and AlphaNET. Talk Alpha-1 after 60 with Mr. Handyside, find the best of the web, and how a CT scan can may help diagnose emphysema all inside this issue of the Registry Update.
Fall 2006

Spring 2005

Registry Update Spring 2005

Find out how science is bringing us closer to fulfilling the mission of the Alpha-1 Foundation, providing the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1. The articles in this edition touch on body weight and alcohol use on liver disease, allergy symptoms and asthma, and physician testing of all COPD patients for Alpha-1. 
Spring 2005

Fall 2005

Registry Update Fall 2005

Read up on our featured CRC the UCLA COPD Center and how Dr. Cooper is providing resources on the west coast. You can also look at diagnosis trends in the Alpha-1 community and see the results of a study on the differences between Alpha-1 augmentation products and more in this issue.
Fall 2005

Spring 2004

Registry Update Spring 2004

Learn about the start of new programs such as the Rare Lung Disease Consortium Project, the National Targeted Detection Program, and the new and improved Alpha-1 program at National Jewish Health in Denver, Colorado. This issue also provides you with the results of several research studies like the national survey of patients with Alpha-1. 
Spring 2004

Spring 2003

Registry Update Spring 2003

New research projects for 2003 are highlighted in this issue as well as informative tips on being enrolled in a clinical trial. Registry member questions are directed to pediatric liver specialist, Dr. William Balistreri of Cincinnati Children's Hospital Medical Center. Find out what his answers are in this issue.
Spring 2003

Fall 2003

Registry Update Fall 2003

Read about the first Alpha-1 International Patient Congress held in Barcelona in June.  This meeting gave delegates from fifteen countries the opportunity to share information about Alpha-1.  Dr. Strange provides an explanation of the new federal law, Health Insurance Portability and Accountability ACT or HIPAA.  Any Registry member enrolling on or after 4/14/2003 must sign the new HIPAA consent form since the personal information they provide on the Registry application falls under HIPAA guidelines of Protected Health Information (PHI).
Fall 2003

Spring 2002

Registry Update Spring 2002

The first Alpha-1 Advocacy Day occurred in Washington DC and was attended by over 150 people! Read about exciting aspects of advocacy, public policy and the progress. Meanwhile, the Washington DC Education day is a success and AlphaNet Coordinators help with the initiative to enroll Alphas in the Research Registry. A larger Registry means more recognition in the medical and scientific communities. Free and confidential testing continues through the Alpha-1 Coded Testing study. ZZ siblings are recruited for the Alpha-1 Sibling Pair Genetic Study. The folding defect related to the Z mutation is explained and research into potential liver disease therapy is being conducted. Expert insight into numerous clinical research directions is provided in this edition. 

Spring 2002

Fall 2002

Registry Update Fall 2002

Privacy protections and ensuring confidentiality of Registry members are discussed as programs continue to evolve. Research regarding genetic discrimination is highlighted. This issue also gives special attention to Alpha-1 liver programs. Read about an Alpha’s personal journey through diagnosis and a liver transplant. John Walsh, President and CEO of the Alpha-1 Foundation, is pictured receiving the FDA Commissioner’s Special Citation award for pioneering collaboration among drug sponsors, patient groups and FDA review divisions. Questions about the S gene are answered in patient Q&A.  

Fall 2002

Spring 2001

Registry Update Spring 2001

Charlie Strange shares his experience from his first year as director of the Research Registry. Read about the many advances that were achieved. Issues of ethics and discrimination are hot topics around home testing for Alpha-1. Meanwhile, the state of Florida awarded a grant to launch a statewide free Alpha-1 screening and detection program because there are tremendous benefits to early detection. Read about the establishment of the DNA & Tissue Bank and progress of ongoing Alpha-1 research. How is the safety of plasma protein therapies ensured? Find out in this issue! 

Spring 2001

Fall 2001

Registry Update Fall 2001

The Alpha-1 Coded Testing Trial has begun! The Research Registry campaigns to enroll 2,002 members by 2002! Read about research awards to the Alpha-1 Foundation and to young Alpha-1 investigators to advance Alpha-1 understanding in novel ways. Learn about challenges of a genetic condition and the method to determine inherited variants of Alpha-1.  

Fall 2001

Fall 2000

Registry Update Fall 2000

The Alpha-1 Research Registry moves to MUSC in Charleston, SC from its earlier home at University of Miami! This change fosters growth in the number of patients in the Registry. Articles by Jim Travis and Harvey Sharp provide historical perspectives in Alpha-1 research. Read about the Foundation’s incorporation of Bioethics and the importance of bioethical consideration in human subjects research. Learn more about Prolastin, nutrition, exercise and more in this issue.

Fall 2000

Winter 2000

Registry Update Winter 2000

Sandy Sandhaus provides Alpha-1 education and clinical care updates in the introduction of this issue and Charlie Strange focuses on the importance of creating a community for research. The Alpha-1 Foundation commits to tackling Federal and State public policy issues with the aim of improving lives of individuals within the Alpha-1 community and their physicians. Read an Alpha’s perspective on attending a conference and learn about Xopanex in the Ask an Alpha-Doc Q&A.

Winter 2000

Spring 1999

Registry Update Spring 1999

Read about the exciting Haverford International Scientific Conference, the first annual conference focused solely on Alpha-1 and related research and therapies. Find out about Working Groups dedicated to improving education and training materials, screening programs and more. Activism and advocacy in Alpha-1 are highlighted as awareness is raised. One of the first CRCs is featured and Monica Davenport shares what it was like to participate in an Aerosol Alpha-1 clinical trial.

Spring 1999