Knowledge tree of FPDMM. In decades to come, the FPDMM knowledge tree will be fed by the natural history study. The tree branches out in main categories such as phenotyping, psychosocial impact, genotyping, and biobanking, which all include various sub-branches. To integrate already existing data sets as well as future studies and to allow international data sharing and sample access, global scientific, legal, and ethical frameworks need to be defined to integrate these data sets and provide biomaterials for research projects. In a positive feedback loop, the growing knowledge will influence and foster future research projects (RP), illustrated as small plants below the tree.