DGAP-News: First Guidelines for Treating Non-Transfusion-Dependent Thalassaemia Introduced at European Haematology Association Meeting
(firmenpresse) - Thalassaemia International Federation
13.06.2013 08:00
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STOCKHOLM, Sweden, 2013-06-13 08:00 CEST (GLOBE NEWSWIRE) --
New guidelines released by the Thalassaemia International Federation (TIF)
address the Management of Non-Transfusion Dependent Thalassaemias (NTDT) and
are a first of their kind in the field of medical haematology. The guidelines,
presented today at the 18th Congress of the European Haematology Association
(EHA), provide a consensus of international expert opinion based on the latest
data in the field, and were developed to give clinicians easy-to-follow
protocols to better identify and manage this patient population, who are often
overlooked or under-diagnosed.
NTDT is a term used to label patients who do not require lifelong regular,
blood transfusions for survival, although they may require occasional or even
frequent transfusions in certain clinical settings and for defined periods of
time. Non-transfusion-dependent thalassaemias include: thalassaemia intermedia,
HbE/thalassaemia and alpha-thalassaemia (HbH), and predominantly affect people of
South and Southeast Asian, Mediterranean and Middle Eastern origin.
'NTDT affects an equal or even larger population than beta-thalassaemia major on a
global scale because NTDT is more prevalent in some of the most populous
regions of the world, like South East Asia and the Western Pacific Region,'
said Dr. Androulla Eleftheriou, executive director of TIF. 'Due to migration
and global population movements, NTDT exists in almost every region and country
of the world including Europe.'
'Over the last decade we have made great strides to better understand the
management of the disease, most notably the role of transfusion therapy and
iron chelation therapy,' continued Dr. Eleftheriou. 'The TIF NTDT guidelines
offer the most current medical evidence to help clinicians make more informed
therapeutic decisions to better influence patient outcomes and avoid disease
complications.'
The new data included in the guidelines will undoubtedly contribute to a better
understanding of NTDT and will clarify for the medical community that even in
the absence of transfusion therapy, NTDT patients are still at risk for
developing chronic iron overload due to increased iron absorption in the
stomach and intestines triggered by the body's need for more red blood cells.
'Without proper disease management, people with NTDT can still develop
dangerous iron buildup in vital organs that can cause serious and potentially
life-threatening complications,' Dr. Michael Angastiniotis, TIF Medical
Advisor, added.
Key highlights in the NTDT guidelines include:
-- Iron chelation therapy should be initiated in NTDT patients with a liver
iron concentration (LIC)>5 mg Fe/g dry weight and maintained until
patients achieve levels<5 mg Fe/g dry weight.
-- Patients who achieve levels below 5 mg Fe/g dry weight could be taken off
the chelator, and given the opportunity for a 'drug vacation', a strategy
that could potentially lessen the psychosocial implications of committing
to a lifelong treatment.
-- Patients should be monitored closely with LIC evaluation every 1-2 years to
identify patients who are approaching values>5 mg Fe/g dry weight and
hence require reintroduction of chelation therapy.
-- The burden of prolonged and regular infusions from desferrioxamine affects
patients' psychosocial stability, quality of life and impacts compliance.
Poor compliance has been shown to negatively correlate with survival. Oral
formulations of iron chelation therapy have been shown to positively impact
patient quality of life and should therefore be considered for NTDT
patients who require iron chelation therapy.
'One of our goals in disseminating these guidelines is to help prepare doctors
and health systems around the world to better understand and recognize the
clinical importance of NTDT and advise doctors who are less familiar with the
disease. This will support better identification and effective treatment of
NTDT patients,' said Dr. Eleftheriou.
'This has become increasingly urgent as increased globalization and immigration
have meant that large immigrant populations have brought NTDT to many countries
where it was very rare in the past, and the need for education and awareness
cannot be overstated,' said Panos Englezos, President of TIF.
-- Copies of the guidelines and other TIF publications are available at
thalassaemia.org.cy/list-of-publications
About TIF
Thalassaemia International Federation (TIF) is an international non-profit,
non-governmental organization, working in official relations with World Health
Organization (WHO) since 1996. It is an umbrella Federation of 112 national
thalassaemia patient associations from 62 countries around the world. Its
mission is the development and establishment of National Control Programmes for
the prevention and quality treatment of thalassaemia and other haemoglobin
disorders in every 'affected' country.
TIF in achieving its mission and goals has established, since 1990, its
educational programme focused on the needs of the patients, the medical
community and the community at large. This programme is internationally
accepted and recognised for its reliable, updated and quality content. The two
main pillars of TIF's educational programme are the organisation of events at
the local, regional and international level and the preparation, translation,
publication and distribution of education material.
Follow the TIF World Congress on Twitter: (at)TIF_2013
Thalassaemia International Federation Media Relations
Shira Gerver
Burson-Marsteller, 230 Park Ave. S.
NY, NY 10003
+1 212 614 4214 (direct)
Shira.Gerver(at)bm.com
Dr. Androulla Eleftheriou
PO Box 28807, 2083 Strovolos, Cyprus
Tel: +357 22 319 129
Fax: +357 22 314 552
thalassaemia(at)cytanet.com.cy
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Datum: 13.06.2013 - 08:00 Uhr
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