The BABY HUG Treatment Study was designed to see if treatment with the drug hydroxyurea (also called HU) in children with sickle cell disease could prevent organ damage, especially in the spleen and kidneys. There was also a chance that treatment could prevent painful crises, lung disease, stroke, and blood infection.


More Information: clinicaltrials.gov, 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.

 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: clinicaltrials.gov, ITHANET Clinical Trials


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: clinicaltrials.gov, ITHANET Clinical Trials