Developing a UK-specific patient registry will help the international alport community to build the critical mass of data needed to enhance the quality of, and encourage further development of much needed research trials. We will collaborate with other organisations on an international basis and link with the patient registries of other countries across the world in order to enhance the quality of research trials (since more reliable results require large numbers of patients in studies).
It is of utmost importance that those who are willing, join the renal registry. The National Registry of Rare Kidney Diseases (RaDaR) is an initiative by UK kidney specialists, the Renal Association. It is designed to pull together information from patients who have certain rare kidney diseases. This will give a much better understanding of how these conditions affect people. It will also speed up research. This work is done in partnership with patients, where the research leads to practical benefits, such as better diagnosis, treatments or general advice this will be publicised on this website.
The best thing to do if you are interested in joining the renal registry, or would like to find out more about it is to go to RareRenal.org, here you find the information about the recruitment process. You can also email firstname.lastname@example.org for details of which centres are already taking part and who the main contact is there.
The figures so far from an Alport perspective as of June 2014 is that there are 51 Alport patients of which 38 are adults and 13 are children.
Lets help increase this by joining now, as it will help us all in the long run.
The patient registry was discussed at The International Workshop on Alport Syndrome.