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CHRONIC DISEASE SURVEILLANCE AND RESEARCH BRANCH (CDSRB)

California Neurodegenerative Disease Registry ​

Patient Record Request  and How to Restrict Use and Disclosure of Personal Information​

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How to Request Your Patient Records

CNDR records can only be released to those who are legally authorized to obtain a patient's confidential information (i.e., self, surviving spouse, conservator, etc.) CNDR requires all patient record requests be made in writing with copy of identification (driver's license, official state-issued identification card, passport, certified copy of birth certificate, etc.). To request your information please complete CDPH form 6236 (Personal Information). To request access by parent, guardian, or personal representative please complete CDPH form 6237. 

Forms must be submitted to:

California Department of Public Health
Office of Legal Services
1415 L Street, Suite 500
Sacramento, CA 95814 

To access forms please click on the links below:

If you have any questions, please contact CNDR at (916) 731-2500, or by email at CDSRBhelp@cdph.ca.gov


How to Request to Restrict Use and Disclosure of Personal Information​

CNDR is permitted to release patient contact information to qualified researchers. Some studies require that researchers obtain additional information from individual neurodegenerative patients. These researchers may contact patients to find out if they want to participate in a research study. However, patients have the right to refuse to participate in any research study without jeopardizing their current or future medical care.

Your rights.

You do not have to join a research study. Medical care and neurodegenerative disease treatment will not be affected if patients do not want to take part in a research study. You may report any concerns about neurodegenerative disease research to the Committee for the Protection of Human Subjects (CPHS) (https://www.cdii. ca.gov/committees-and-advisory-groups/ committee-for-the-protection-of-human - subjects-cphs/). If you do not want your information shared with any researchers, you can request to restrict use and disclosure of personal information by completing CDPH forms 6240 or 6241 and submit it to:

Forms must be submitted to:

California Department of Public Health
Office of Legal Services
1415 L Street, Suite 500
Sacramento, CA 95814 

To access forms please click on the links below:

If you have any questions, please contact CNDR at (916) 731-2500, or by email at CDSRBhelp@cdph.ca.gov.​​

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