CACNA1A Foundation
Draft Data Use Agreement
Help a rare disease nonprofit facilitate the sharing of data with partners.
Posted September 30, 2024
Work & Deliverables
This project involves drafting a comprehensive Data Use Agreement (DUA) to facilitate the sharing of census and clinical information with industry partners for drug development purposes. The agreement will define the terms under which clinical data can be accessed, used, and shared, ensuring compliance with privacy regulations and ethical standards. The DUA will address critical elements such as data security, patient confidentiality, intellectual property rights, and usage limitations to protect the interests of both the data providers and recipients. By establishing a clear legal framework, the agreement will promote collaboration with industry partners while safeguarding patient information and supporting the advancement of drug development efforts.

CACNA1A Foundation
We are a parent-led rare disease patient advocacy organization. Our mission is to find specific treatment options and a cure for CACNA1A patients by building a collaborative network of patients, families, clinicians and scientists that will work together to raise awareness and accelerate the understanding, diagnosis and treatment of CACNA1A-linked diseases.

CACNA1A Foundation
We are a parent-led rare disease patient advocacy organization. Our mission is to find specific treatment options and a cure for CACNA1A patients by building a collaborative network of patients, families, clinicians and scientists that will work together to raise awareness and accelerate the understanding, diagnosis and treatment of CACNA1A-linked diseases.