It is one of our goals at curebs.com to create a database of Blau patients that can be accessed and updated by patients as well as doctors. I believe that by being able to share information, similarities, differences, treatments that work and those that fail – we increase our knowledge about this condition and hopefully we will all be guided towards better outcomes.
There is an existing registry of Blau patients called the Pediatric Granulomatous Arthritis Registry and there is a database called INFEVERS, part of which catalogs NOD2 mutations. We are contacting all the doctors involved in these registries to see how we can work along side of them. I want to know what information they would find helpful for their research so that we can collect the information that will be most useful to all of us.
It will be our mission to locate as many Blau patients as we can all over the world. We are in the planning stages on how best to go about this. The orphanet website quotes a Danish registry that estimates that this condition effects 1/1,670,000. This means that in a global population of almost 7.5 billion it means that there should be over 4000 patients out there – where are they?
Of course - once we find the patients and collect the relevant information there will be the storage and encryption of this information to consider. Creating a database of medical information is a sensitive issue – I am currently investigating the best way to go about this to ensure that all confidential information stays confidential.
If you have any ideas about what information to collect, how to store it or anything related to the database I’d love to hear them – you can email us at firstname.lastname@example.org
I will update this post as we get further along in the database creation process.