DSD-TRN has partnered with Accord Alliance, a non profit organization that promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development (DSD).
Accord Alliance serves as a critical liaison between the sites’ clinicians and researchers and patient advocacy groups, ensuring that the Registry is designed with the input of patient representatives and that the information entered to the Registry is returned to the provider with the added value of interpretation and suggestions for clinical management of the individual patient and family as well as creating the environment for continuous quality improvement in the model of care delivered across study sites. More information about Accord Alliance can be found at: http://www.accordalliance.org/