The AID registry is the important epidemiological tool for our researchers
working in the field of low prevalence diseases like AID. It serves as the
essential data base for the AID-Net. Clinical and laboratory parameters of a
population-based and longitudinal data collection were defined and are
available via the website www.aid-register.de. Until April 2014, 919
patients have been recruited to the registry, 158 DNA und 845 serum samples
of 376 patients were deposited in biomaterial banks (BMB). In this funding
period we will continue to collect data to evaluate genetic, epidemiological, and
clinical characteristics of AID. In a translational approach, genetic and
serological markers and clinical features will be identified for stratification of
patients, monitoring of disease activity and therapy, or prediction of disease
outcome. The availability of larger, standardized data sets is expected to
improve quality control. Using online links the AID registry provides a platform
for national and international networking of AID research. At the moment 16
projects are ongoing and 4 projects are finished. This is a precondition for the
development of reliable treatment guidelines. Our short-term aim is to
implement and improve evidence-based therapeutic standards, with a focus on
risk-adapted approaches in AID. Stratification of patients in responder and nonresponder
courses will lead to the best individual therapy. Escalation and
finishing of treatment are depending on the severity of the disease, prognostic
factors, toxicity, complications and treatment response. The major aim of the
registry is the provision of a high-quality data platform allowing evidence-based
diagnostic and therapeutic decisions in the future as well as generation of
hypotheses for future scientific endeavors.
working in the field of low prevalence diseases like AID. It serves as the
essential data base for the AID-Net. Clinical and laboratory parameters of a
population-based and longitudinal data collection were defined and are
available via the website www.aid-register.de. Until April 2014, 919
patients have been recruited to the registry, 158 DNA und 845 serum samples
of 376 patients were deposited in biomaterial banks (BMB). In this funding
period we will continue to collect data to evaluate genetic, epidemiological, and
clinical characteristics of AID. In a translational approach, genetic and
serological markers and clinical features will be identified for stratification of
patients, monitoring of disease activity and therapy, or prediction of disease
outcome. The availability of larger, standardized data sets is expected to
improve quality control. Using online links the AID registry provides a platform
for national and international networking of AID research. At the moment 16
projects are ongoing and 4 projects are finished. This is a precondition for the
development of reliable treatment guidelines. Our short-term aim is to
implement and improve evidence-based therapeutic standards, with a focus on
risk-adapted approaches in AID. Stratification of patients in responder and nonresponder
courses will lead to the best individual therapy. Escalation and
finishing of treatment are depending on the severity of the disease, prognostic
factors, toxicity, complications and treatment response. The major aim of the
registry is the provision of a high-quality data platform allowing evidence-based
diagnostic and therapeutic decisions in the future as well as generation of
hypotheses for future scientific endeavors.