A login and password obtained from the ESID Database coordinator in Freiburg are necessary to access the database but ESID does not ask for userlogin information, passwords or any other personal login information by email, telephone or any other way. If you have received anything of this nature, please delete it immediately and inform the database administration group via telephone or e-mail.
Primary Immunodeficiencies (PID) are rare, chronic and severe disorders of the immune system in which patients cannot mount sufficient protective immune responses leading to an increased susceptibility to infections. These deficiencies are poorly recognized in daily medical practice, expensive to treat and require life-long medical attention. The impaired immune functions are caused by different mutations in different genes involved in the immune system. Centres from all over Europe, specialising in PID are collaborating under the auspices of ESID to document their patients into a single database available online here.
To date there are over 180 different types of primary immunodeficiencies known which can be grouped into 7 main categories. We have structured the database accordingly. A patient is documented in the sub-registry of his respective disease. All sub-databases have certain basic fields in common: diagnosis, gender, age of patient at diagnosis, the information whether sporadic or familial, current medication, adverse effects of treatment, basic lab values, and genetic mutation data.
Some of these fields form a "core data set" which have to be filled out to avail of our compensation policy. Additional fields specific for a particular immunodeficiency are also available for documentation of the more common primary immunodeficiencies. Long-term documentation is requested - the date of patient attendance at the clinic is recorded and associated data such as a change in the treatment regimes can be documented.
Please choose one subregistry. The ones marked in light blue contain a disease specific subregistry, while the others only contain the core dataset and core laboratory.
