PATIENTS’ RECRUITMENT for RESEARCH

Studies and Trials on Renal Genetic Diseases

Below is some briefs on current studies and trials for which FEDERG support has been thought for mobilizing the patient community.

Early Pro-Tect trial (Alport): Contact Pr. Gross  at gross.oliver@med.uni-goettingen.de

FEDERG support the project supported by German Ministry of Education and Research of the EARLY PRO-TECT trial. This trial aims at providing valuable information on the safety and efficacy ACE inhibitors used to treat children with Alport Syndrome, in particular for the additional benefit of treating children prior to the clinical symptoms.
National associations in Europe concerned by ALPORT patients and members of FEDERG, have been very active in supporting research on Alport syndrome during the last ten years. In particular they have financed the research made between 2005 and 2010 under your leadership on the use of ACE inhibitors in Europe showing for the first time the benefits of such treatment to protect the kidney and delay the end stage of renal disease. They also organised the first International Workshop on “Research strategy for Alport Syndrome” in Oxford early 2014.

Several recruitment centers have been set in Europe, details by contacting Professor Gross.

Athena Study (Alport):

A clinical study in Alport syndrome patients being conducted by Regulus Therapeutics, a biotechnology company located in the United States.  The purpose of this research study is to collect data and understand the way Alport syndrome affects your kidneys over time.

Alport syndrome patients are eligible to volunteer for this study if they are 16 years or older and have a confirmed diagnosis of Alport syndrome.  The first visit will require coming to the study doctor’s clinic and then every 6 months thereafter.  Patients will be offered an option to have a study nurse come to the home on alternating visits, rather than travel to the doctor’s clinic.

If you are interested in learning more, please visit the following websites to find a clinic near you:
http://clinicaltrials.gov/ct2/show/NCT02136862
http://alportstudy.com/

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