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5.3.2010 |
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Request for teeth |
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27.1.2010 |
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Financial Support to keep the Information centre – A Plea from the heart |
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17.11.2009 |
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3rd AKU conference in Siena |
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12.8.2009 |
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Clinical evaluation programme |
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10.6.2009 |
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EU health ministers tackle rare diseases |
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12.5.2009 |
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Blue Badge holders UK road atlas |
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26.2.2009 |
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Call to develop national plan for treatment of rare diseases |
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27.1.2009 |
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Tissue donation |
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HAVING SURGERY? PLEASE DONATE YOUR TISSUE TO HELP OUR RESEARCH
The Alkaptonuria Society has a strong partnership with the University of Liverpool and our research is aimed at increasing the understanding of the mechanism(s) of damage to tissues in people with AKU. To do this we require blood, urine, joint fluid and other tissues from people with AKU, all of which are easily obtained at the time of surgery.
As you know AKU is a rare condition and we want to collect as much
tissue as possible. We hope these tissues and fluids will help us gain
a greater understanding of AKU and possibly develop new treatments. As researchers we will use these tissues to answer many of the questions asked by people with AKU. Any
fluids and tissues that are removed during surgery are normally thrown
away and this is such a waste from a research point of view.
If you are due to have any surgery, including joint replacement and
arthroscopy, please let us know. If you are happy to
give us tissue collected during this surgery we can discuss how to proceed and send you an information sheet and consent form. We have been given permission to collect the tissues and fluids by the Liverpool Research Ethics Committee.
We would like your permission to collect the following at the time of surgery:
Joint replacement - blood, urine, joint fluid and any tissue samples.
Arthroscopy - joint fluid, blood and any other tissue samples.
The only way to collect the tissue properly is to plan the collection before the arthroscopy or other procedures. This means working with people who have AKU and the surgeons before the day of the procedure. This way we can be really organised and maximise the amount of research we are able to do with these tissues.
For further information regarding donating tissues from surgery or enquiries please contact – Bev Hebden at the Alkaptonuria Information Centre (bev@alkaptonuria.info).
The AKU Society works closely with two departments at the University of Liverpool; the Department of Human Anatomy and Cell Biology, one of the leading Departments of Anatomy in the UK and the Department of Clinical Chemistry. The Anatomy Department is an active teaching institute using human cadavers to educate medical professionals and medical students.
Medical science is very grateful to those benevolent individuals who bequeath their bodies for use after death to help doctors and other health care professionals to learn the intricacies of the human body, prepare for clinical practice, and carry out medical research.
All donations are covered by the Human Tissue Act (2004) and are subject to regulation by the HTA (Human Tissue Authority).
The partnership between the AKU Society and the Department of Human Anatomy and Cell Biology and Department of Clinical Chemistry allows researchers to examine donated bodies of AKU sufferers to further enhance the understanding of the disease and its features, in order to move towards a treatment or cure for this rare and debilitating disease.
If you suffer from AKU and wish to donate your body please contact Denise Roberts by one of the following methods:
Enquiries to:
The University of Liverpool
Bequeathal Office
Department of Human Anatomy & Cell Biology
Sherrington Building
Ashton Street
Liverpool
Merseyside
L69 3GE
Tel: 0151 794 5442
Email: denise.roberts@liv.ac.uk
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