For Researchers
The TBRS and DNMT3A Patient Registry collects disease-specific natural history data about individuals with TBRS, HESJAS, and DNMT3A-related disorders, with the goal of improving the understanding of these disorders, and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
- Socio-demographics
- Medical history
- Diagnostics
- Treatment
- Disease progression
- Quality of life
- Clinical trial participation
Please submit a request here. Access to TBRS and DNMT3A Patient Registry data is contingent upon project approval by the TBRS Community Medical Advisory Board.