For Reseachers
The AID collects disease-specific natural history data about individuals with Albinism/HPS/CHS, with the goal of improving the understanding of Albinism/HPS/CHS and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
- Clinical trial participation
We are interested in sharing our data with you! If you would like access to the AID data for a research project, please contact our registry administrator at databank@hpsnetwork.org for more information. Access to AID data is contingent upon project approval by the AID Registry Advisory Board.