Report on existing tools for collection, storage and distribution of clinical data, with best practice guideline on reporting results from research

Evaluation of the two main models for data collection that are being examined: 1. data collection by patients/families using existing tools and those under development, e.g. web-based tools where patients/families can themselves fill in data . 2. collecting data from hospital files to specific registries either ‘conventionally’ by clinicians and researchers or with methods based on electronic, structured health records which enable automated collection of the data.