Cynthia Stapornwongkul, Alexandra Nieters, Paulina Staus, Stephan Rusch, Anita Delor, Ulrich Baumann, Julius Wehrle, Melanie Boerries, Markus G Seidel, Bodo Grimbacher, Gerhard Kindle
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引用次数: 0
Abstract
Background: Patient registries are an important tool for networking medical caregivers and research, especially in the field of rare diseases. Individuals afflicted by multi-organ autoimmune diseases typically suffer from inflammation of multiple organs.
Project: GAIN (German genetic multi-organ Auto-Immunity Network) is the German network for research and therapy optimisation for individuals with congenital multi-organ autoimmune diseases. As a sub-project of the network, the registry systematically collects data from this patient group and makes it available for research purposes.
Results: A data set was developed and made available for the GAIN Registry that can map the complex clinical status of persons with multi-organ autoimmune diseases. Data from 486 individuals have been documented to date.
Conclusions: The GAIN register allows for a very comprehensive documentation that clearly goes beyond previous approaches, e.g. by linking it to biosamples collected in the consortium. The planned inclusion of patients in the documentation, e.g. of data on quality of life, opens up a new field.
背景：患者登记是医疗护理人员和研究人员建立联系的重要工具，尤其是在罕见病领域。多器官自身免疫性疾病患者通常患有多器官炎症：GAIN（德国遗传性多器官自身免疫网络）是德国针对先天性多器官自身免疫疾病患者的研究和治疗优化网络。作为该网络的一个子项目，登记处系统地收集了这一患者群体的数据，并将其用于研究目的：结果：为 GAIN 登记处开发并提供了一个数据集，该数据集能够反映多器官自身免疫疾病患者复杂的临床状况。迄今已记录了 486 人的数据：GAIN登记册可以提供非常全面的记录，这显然超越了以往的方法，例如通过将其与联盟收集的生物样本联系起来。计划将患者纳入记录范围，例如生活质量数据，这开辟了一个新的领域。
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