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thal day2013

May 8 marks the international thalassaemia day aiming to raise awareness of the disease. On this special day, every year, Thalassaemia International Federation (TIF) focuses on a different theme that intervenes with the quality and appropriate treatment of patients and impacts their quality of life. This year TIF is bringing to the forefront the treatment around thalassaemia intermedia and is inviting all national thalassaemia associations across the world and other patient support groups to find out more about this disease, within the theme:

The right for quality health care of every patient with thalassaemia: major and beyond

For more information visit the dedicated International Thalassaemia Day at the TIF website and read the TIF's message.

 

eucerd

The seventh meeting of the European Union Committee of Experts on Rare Diseases (EUCERD) took place on 31 January – 1 February 2013 in Luxembourg: the plenary session was preceded by breakout sessions by stakeholder group to discuss the draft EUCERD Recommendations on Common Principles and Consensus on patient registries and data collection for rare diseases.

 

Read the full summary here (PDF) and visit the official EUCERD website.

The study will seek to enroll 100 sickle cell or thalassemia patients who are age 12 or older who have access to a smartphone or tablet with Internet access daily. It will evaluate patient-reported comfort level with using a mobile device to record their pain levels, as well as adherence to recording these levels daily and it will track patients' assessment of their pain, actions taken, and outcomes related to pain management and provider involvement. This study will attempt to collect information about differences in the use of two traditional pain assessment modes (verbal scale and paper) versus the use of a pain assessment tool on a mobile device in the form of a smartphone, tablet, or iPad with an Android or iOS operating system.

 

More Information: clinicaltrials.gov, ITHANET Clinical Trials

ApoPharma

The objective of this study is to evaluate the pharmacokinetics of deferiprone and its 3-O-glucuronide metabolite following administration of a single 1500 mg dose of Ferriprox in patients with sickle cell disease. The study, sponsored by ApoPharma, starts in May 2013 and the expected completion date is July 2013.

 

More information: clinicaltrials.gov, ITHANET Clinical Trials

 

ITHANET

A new article was added in IthaPedia under the Category Tag "Educational resources". The aim of this section is to create an online repository of educational articles, written by experts on the corresponding topic, that will be useful for both patients and scientists. The new article was written by Ersi Voskaridou, Dimitrios Christoulas and Evangelos Terpos and is entitled "Thalassaemia induced osteoporosis".

 

The ITHANET Team would like to thank the authors for their valuable contribution.

 

More information: IthaPedia

  1. Efficacy/Safety Study of Deferiprone Compared to Deferasirox in Paediatric Patients
  2. Sickle Cell Disease - Stroke Prevention in Nigeria Trial (SPIN)
  3. EU provides €144 million for new research on rare diseases
  4. Cognitive Rehabilitation in Sickle Cell Disease

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