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email forum - by joining the group e-mail forum you will be in contact with Alpha patients, their families, carers and friends living throughout the UK and overseas. We are a friendly group, and between us we have a wealth of knowledge and experience to share. There is always someone to help with any worries or queries you might have.

What is Alpha-1 Antitrypsin Deficiency?

Alpha-1 Antitrypsin Deficiency also known as Alpha-1, A1AD or AATD is an inherited, genetic condition that is passed on from generation to generation. As the name suggests it is a deficiency of alpha-1 antitrypsin (AAT) in the bloodstream. AAT is an enzyme produced in the liver to help protect the tissues of the body during infections. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

Newsletter Autumn 2018 Now Available


Autumn 2018 Alpha-1 UK Newsletter Issue 17
Now Available

Contains 36 pages full of News and Information including:

21 years Alpha-1 UK Support Coming of Age, Research & Global Congress update, Members Stories and much more

 

Top Story

Alpha-1 UK Support Group & Alpha-1 Awareness are very pleased to announce exciting news about a new drug trial for the UK

 

UK trial sites open for ASTRAEUS Study into Alpha-1 Antitrypsin Lung Disease

A clinical research trial of a potential new therapy for adults affected by Alpha-1 Antitrypsin-related lung disease has opened in the UK and has started enrolling patients.

Seven trial sites – in Birmingham, Cambridge, Coventry, Edinburgh, Leicester, London and Southampton – are already open, and it is anticipated that additional sites will be added in due course.  There are many sites spread across the UK and Scotland, so you have the opportunity to hopefully find a site nearby and minimise the travel time for study visits.

All details are available on the UK website www.astraeus-alpha1.com, where you will be able to find more details, check if you are eligible for the study and get in contact with a trial centre near to you. There are also details on the official clinical trial registry:  www.clinicaltrials.gov/ct2/show/NCT03636347.

All patients interested in participating in this study are at liberty to contact any of the study centres to discuss the trial.  If you are interested in participating in this study, please use the website link above to find a suitable trial site or contact any of the study centres directly to discuss the trial.  Your preferred study centre does not have to be the same centre where you receive your regular care for Alpha-1 and may be chosen based on ease of access and personal preference.

The Astraeus Study is testing the safety of a research drug and whether it has the potential to reduce lung damage and slow the progression of lung disease caused by Alpha-1 Antitrypsin Deficiency.  The potential treatment, alvelestat, is taken as tablets and has already been tested in people with other lung diseases.

You must meet the study inclusion criteria which, amongst others, include the age range of between 18 to 75 years and a diagnosis of Alpha-1 Antitrypsin Deficiency lung disease.  The referral section of the Astraeus website will help you make the initial determination and also direct youtowards the different physicians leading the trial centres.  The physicians at the different trial centres will be able to advise if you are eligible based on the study criteria, which have been agreed by the regulatory ethics committees here in the UK.

Enrolled participants will receive all study-related care, testing and study medication at no cost.  You will receive study drug for about 12 weeks and you will be in the study for approximately 20 weeks in total.  You will need to visit the research site about 9 times and receive 2 phone calls during the study.

  Location (Alphabetical)

  Study Doctor

  Contact Details

  Birmingham

  Dr. Alice Turner

  0121 371 3885

  Cambridge

  Prof. Ravi Mahadeva

  0122 334 8119

  Coventry

  Prof. David Parr

  0247 696 6205

  Edinburgh

  Dr. Roberto Rabinovich

  0131 536 3143

  Leicester

  Prof. Bibek Gooptu

  0116 229 7137

  London

  Prof. Nicholas Hopkinson

  0207 352 8121

  Southampton

  Prof. Tom Wilkinson

  0238 120 5341

 For more information, please see:  www.astraeus-alpha1.com.

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