ADCY5 International Patient Registry

ADCY5.org is the only patient-driven site dedicated to helping collect  and secure ADCY5 gene mutation information.


The most important thing our rare ADCY5 mutation community needs to do is come together to build knowledge and collect information.


What is a patient registry?

A patient registry is a centralized, secure place to store medical information, test results, tissue samples, and blood samples so that ADCY5 families easily manage this information.  


Why is it important?

Having this information organized in one place makes it much easier for doctors and researchers to study the ADCY5 gene mutation. The more information that is collected on the ADCY5 gene mutation, the more information researchers have to study. This will hopefully lead to new discoveries and treatments that can help the ADCY5 gene mutation families.


Where will the information or the biosamples be stored?

 ADCY5.ORG is collaborating with established registry and biobank organizations to ensure

that the data and samples are stored and managed in accordance with international

standards and applicable privacy laws.


Who can see our information?

The registry will be set up so that the patient or the patient's family has control of who can

access the medical information.


Will I be able to get my information out of the registry?

Yes, once the information is loaded into the system you will be able to extract your information in electronic format and your bio samples can be sent to institutions that are set up to receive and manage these types of samples. The patient controls their medical records.


What are the next steps?

The first step is to contact us so that a medical records expert can help you collect your medical information from doctors, hospitals, and other healthcare providers. You would need to sign a release so that the clinical research organization can retrieve your records for you and load them into the registry. Please email us info@adcy5.org.


Can I talk to a family with an ADCY5 gene mutation patient about this?

You can talk at any time with a family.  Please e-mail your contact information to info@ADCY5.ORG.