The Organic Acidemia Natural History Registry

The Organic Acidemia Natural History Registry collects disease-specific natural history data about individuals with an organic acidemia, with the goal of improving the understanding of organic acidemias 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
• Nutrition, diet, and exercise
• Insurance and 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 Organic Acidemia Natural History Registry data for a research project, please contact our registry administrator at mkstagni@gmail.com for more information. Access to Organic Acidemia Natural History Registry data is contingent upon project approval by the Organic Acidemia Natural History Registry Advisory Board.

For additional information or inquiries, please contact us at mkstagni@gmail.com or at 612-382-8708.