children hospital oakland

The primary aim of this study is to measure zinc status and related proteins in patients with Thalassemia who have or do not have diabetes. The secondary aim will be to explore the effect of zinc supplementation on glucose metabolism in patients with thalassemia. It is estimated that the study, which started in November 2012, will be completed in December 2014.


More information:, ITHANET Clinical Trials

rare disease day

February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries. On and around this day hundreds of patient organisations from more than 60 countries worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders” Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!


Find out how to Get involved. Find out more about this year's theme.

For more information please visit the event's website.

thalamoss logo 400

The Kick-Off/Scientific meeting of THALAMOSS will be held on January 14-15 at Ferrara, Italy. THALAMOSS, which stands for THALAssaemia MOdular Stratification System, is a research project funded from the 7th Framework Programme of Research & Development of the European Union. The project brings together 13 leading European and US Research Institutions, as well as European and Israeli SMEs.  The ITHANET Portal is one of the partners of the THALAMOSS project.

The Scientific Meeting will be held on January 14 and is is entitled "From basic research to novel applications on the road of personalized treatment of thalassaemia". According to the meeting announcement: "The specific aims of the THALAMOSS Project will be achieved by the development of novel methods for associating variation in genomic data with phenotypic variation. THALAMOSS will combine cutting edge computing technology with optimized algorithms to mine the unique datasets provided through the proposed project for biologically and medically relevant patterns that can be reliably associated with specific patient groups, treatment response and disease progression. In addition to stratification of patient samples for their molecular properties, the proposed project will also analyse responsiveness to advanced therapeutic approaches to classify patient samples, analysing this responsiveness both as a consequence of molecular properties and as a determinant of the success of novel therapies.

More information about the scientific meeting can be found here.


The primary objective is to assess whether inhaling vaporized cannabis ameliorates chronic pain in patients with sickle cell disease (SCD). As these patients will all be on chronic opioid analgesics, the investigators will also assess the possible synergistic affect between inhaled cannabis and opioids. The investigators will also assess the clinical safety of the concomitant use of cannabinoids and these opioids in patients with SCD by monitoring the short-term side effects associated with combined therapy. Finally, the investigators will evaluate the short-term effects of inhaled cannabis on markers of inflammation and disease progression in patients with SCD.


More information:, ITHANET Clinical Trials

Duke logo

In this study, Laser Doppler Flowmetry (LDF), Laser Doppler Imaging (LDI), Orthogonal Polarization Spectral Imaging (OPSI), and Optical Coherence Tomography (OCT)will be used to assess differences in microvascular function and density of oral mucosa and skin in subjects with 1) autoimmune diseases with cutaneous involvement: systemic sclerosis (SSc), morphea, dermatomyositis, cutaneous lupus and vasculitis, 2) sickle cell disease (SCD) and 3) chronic graft-versus-host disease (GVHD) compared to healthy subjects. The microvascular changes will be compared to overall treatment response in patients with scleroderma and chronic GVHD as assessments will be made before and after the patients start treatment for their diseases and determine if these imaging techniques provide valuable and reproducible data when assessing a patient's response to treatment for those diseases. In addition, the application of Acoustic Radiation Force Impulse (ARFI) in determining cutaneous thickness in patients with SSc, GVHD and morphea will be evaluated.


More Information:, ITHANET Clinical Trials