Proposal for the development of an international minimal data collection for juvenile dermatomyositis (JDM)
作者： Liza J McCann , Clarissa Pilkington , Laura Beard , Angelo Ravelli , Adam Huber
DOI: 10.1186/1546-0096-9-S1-P51
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摘要: Conclusion Development of an international minimal data collection for use in trials would allow greater understanding disease course and prognosis, enhance collaboration between groups, facilitate linking to biobanks. The proposed dataset require testing through existing collaborations (IMACS, PRINTO others). Collaboration with adult groups (eg. via Euromyositis) may harmonised from paediatric services, providing valuable outcome this rare disease.
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