The DHPS Registry collects disease-specific natural history data about individuals with DHPS, with the goal of improving the understanding of DHPS and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
If you would like access to the DHPS Registry data for a research project, please contact our registry administrator at DHPSRegistry@gmail.com. Access to DHPS Registry data is contingent upon project approval by the DHPS Foundation Advisory Board.
“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/viewarticle/837851?src=par_nord_stm_mscpedt&faf=1 Originally published on Medscape Rare Diseases as part of the NORD and Medscape Editorial Collaboration.