Why do we need a HLH registry for adults?
Although the clinical picture of HLH is known since the 1920s of the last century and many individual case reports exist for Germany and most European countries no systematically collected data on epidemiology, used therapy protocols, clinical and laboratory parameters and outcome of HLH-patients exist. Especially such a heterogeneous population of patients can be best displayed in the form of a registry. To answer some of the mentioned open questions a web-based registry database was created in collaboration between the Center for Clinical Trials Jena and the Department of Hematology and Oncology, University Hospital Jena. In this database data of adult HLH patients on diagnoses, comorbidities, clinical picture, laboratory parameters, therapy and outcome are collected in a in a pseudonymized way. For the HLH-registry exists a positive ethics approval by the ethics commission of the University of Jena.
We appeal to all fellow doctors who treat patients with suspected or diagnosed HLH, please contact the HLHia centre in Jena and include patients into the HLH register. a href=”http://www.hlh-registry.org/wp-content/uploads/2014/09/Patientenaufkl%C3%A4rung_v03.pdf”>Patient informed consent and documentation form can be found here. If you need a specific institutional access to the HLH – register, we ask for return of the completed application form to ZKS Jena via mail or fax. So you can document the data online and have an overview of the HLH cases in your clinic. In this way, the register can also help to improve the diagnosis and treatment of future HLH patients in your clinic.