Thromkid – a Competence Network for Functional Platelet Abnormalities

Hereditary disorders of platelet function are often complex. Bleeding due to defective platelet function may be intermittent and unpredictable. Only few guidelines concerning testing for platelet function and treatment of affected patients have been developed so far. These experiences prompted the authors to initiate a collaborative patterns- of-practice survey and to establish a competence network in order to improve diagnosis and treatment of affected patients in German speaking countries (Thromkid quality project). Materials and Methods: Data were obtained by using standardized survey protocols between May 2005 and August 2006. Results: A total of 50 centers were identified. 88% agreed to participate in Thromkid. The laboratories offered a median of 4 tests. All laboratories offered platelet aggregometry. 28 laboratories used the PFA-100® closure time. Further widely used tests were the in vivo bleeding time and flow cytometry. 215 affected patients were identified 123 of whom fulfilled the authors’ set of criteria, 43% were considered poorly characterized. Morbus Glanzmann, aspirin-like defects, and receptor defects were the most common diagnoses. Discussion: Future activities include i) to establish a web-based register of all centers, ii) to establish a patient registry, and iii) to prepare the basis for well-designed clinical studies resulting in rational and clinically useful guidelines for diagnosis and treatment of affected patients.