The Global Action series “Trial Watch” has in the past covered several trials of treatments for aHUS patients and even some information on other diseases which could be of potential benefit to aHUS patients..
Usually these trials have been found listed on the well known database of trials known as ClinicalTrials.Gov.
This is a resource created and managed by the U.S. Department of Health and Human Services, National Institutes of Health, National Library of Medicine and Center for Biotechnology Information.
There is another database of clinical trials which is run by ClinicalTrials.eu.
Global Action has formed a partnership with the organisation to help aHUS patients in Europe in particular but also others be aware of trials of treatments that could be of benefit to all eventually.
ClinicalTrials.eu’s search engine provides patients in Europe with easy access to complete, up-to-date, and accessible information, about clinical trials for treatments for their specific disease.
Their platform is available in seven languages and there are specific pages for aHUS.
In return ClinicalTrials.eu will provide information about Global Action’s aHUS patient platform.
Global Action has aHUS information and articles in several European languages. The recent Global Poll run by Global Action was translated into several languages and shows our commitment to having more content for the majority of aHUS patient who do not have English language skills. Including details about a new trial .
ClinicalTrials.eu’s presence on rarediseases.org is already proof of their reliability and commitment to helping patients with rare diseases. They have already been collaborating with numerous patient organizations and universities across Europe, and they are also participating in the EU-X-CT initiative, which focuses on cross-border access to clinical trials for patients with life-threatening and rare diseases.
The aHUS pages at ClinicalTrials.eu can be found at this link
| Atypical Hemolytic Uremic Syndrome: | https://clinicaltrials.eu/on/ |
Global Action will be alerted to any new trial which will feature in our Trials Watch series in the future.
Article No. 681
