Maintaining the confidentiality of persons whose medical data are reported to CPDR/CNDR is mandated by law and is the highest priority in registry operations. Information about Parkinson's disease and other neurodegenerative disease* is kept private and confidentiality of data collected is strictly maintained. The California Department of Public Health has more than 50 years’ experience handling confidential records and all data is stored securely according to strict departmental protocols. Laws, regulations, and programmatic safeguards are in place throughout the system to assure patient confidentiality.

Parkinson's disease and other neurodegenerative disease* researchers will go through a rigorous process to access CPDR/CNDR data including an approval process by a certified institutional review board. If their application is approved, they will receive only the required information for their approved purpose. CPDR/CNDR will only release patient contact information to qualified researchers under tightly controlled circumstances. Policies and procedures for accessing confidential data for CPDR/CNDR will be posted on the CPDR/CNDR website when available.

*"Neurodegenerative disease" may include, but is not be limited to, Alzheimer's disease, multiple sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
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Confidentiality of data collected is strictly maintained in accordance with Health and Safety Code Sections 103870 (g) and 103870.1 (a-f); Civil Code, Sections 56.05 and 1798; Government Code Sections, 6250-6265; and Federal Law PL 104-191.

All reporting requirements are provided to providers so there is nothing patients must do.

According to statute, all providers diagnosing or treating a patient must report to the state, regardless of reporting by another provider.

CPDR/CNDR will use the data to write reports that inform the public, health care providers, public health agencies, advocates, and legislators about the status of Parkinson's disease and other neurodegenerative disease*. These summary reports do NOT contain any information about individual Parkinson's disease and other​neurodegenerative cases. The data in these reports are combined into groups for analysis.

The same law that mandates that all cases of Parkinson's disease and other neurodegenerative disease* diagnosed or treated in California be reported to the state, also requires that Parkinson's disease and other neurodegenerative disease* registry data only be released for specific research purposes relating to demographic, epidemiological, or other similar studies of the CPDR/CNDR. The law mandates that patient identity be kept confidential, but also that confidential information may be released for research as described above.

CPDR/CNDR takes the protection of a patient’s confidential health information very seriously.

CPDR/CNDR will only release information to qualified researchers under tightly controlled circumstances where the research has first been approved by a certified institutional review board. If their application is approved, they will receive only the required information for their approved purpose.

Patients have the right to refuse to participate in any research study without jeopardizing their current or future medical care.

Parkinson's disease and other neurodegenerative disease* patients may request that their contact information be withheld from researchers by contacting CPDR/CNDR at (916) 731-2500, or by email to <a href="mailto:CDSRBhelp@cdph.ca.gov">CDSRBhelp@cdph.ca.gov</a>.

*"Neurodegenerative disease" may include, but is not be limited to, Alzheimer's disease, multiple sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.​
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Yes. Individuals will have the right to access records containing their personal information maintained by CPDR/CNDR according to California Health and Safety Code 103870.1 (f) (2) and the California Information Practices Act, Civil Code Sections 1798 – 1798.78.

Parkinson's disease and other neurodegenerative disease* patients may request their CPDR/CNDR record by contacting CNDR at (916) 731-2500, or by email to <a href="mailto:CDSRBhelp@cdph.ca.gov">CDSRBhelp@cdph.ca.gov</a>.

*"Neurodegenerative disease" may include, but is not be limited to, Alzheimer's disease, multiple sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.​
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<p style="line-height: 1.6;">CPDR/CNDR records can only be released to those who are legally authorized to obtain a patient&#39;s confidential information (i.e., self, surviving spouse, conservator, etc.) CPDR/CNDR requires all patient record requests be made in writing with copy of identification (driver&#39;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.&#160;<br/></p>
      <p style="line-height: 1.6;">Forms must be submitted to:<br/></p>
   </div>
   <blockquote style="padding: 0px; margin-bottom: 0px; margin-left: 40px; border: none;">
      <div class="NewsItemContent">
         <p style="line-height: 1.6;">
            <span style="font-size: 1em;">
               <span style="font-weight: 700;">California Department of Public Health</span><br/><span style="font-weight: 700;">Office of Legal Services</span><br/>1415 L Street, Suite 500<br/>Sacramento, CA 95814&#160;</span><span style="font-size: 1em;">​</span><span style="font-size: 1em;">​</span></p>
      </div>
   </blockquote>
   <div class="NewsItemContent" style="font-size: 18px;">
      <p style="line-height: 1.6;">To access form please go to:</p>
      <ul>
         <li>
            <span class="ms-rteStyle-TextBoldStyle">6236&#160;(Personal Information)​</span><br/></li>
         <ul>
            <li>
               <a href="https://www.cdph.ca.gov/CDPH%20%20Document%20Library/ControlledForms/%20cdph6236.pdf">https://www.cdph.ca.gov/CDPH%20 Document%20Library/ControlledForms/ cdph6236.pdf</a></li>
         </ul>
         <li>
            <span class="ms-rteStyle-TextBoldStyle">6237</span>&#160;​<span class="ms-rteStyle-TextBoldStyle">(Parent, Guardian, or Personal Representative​)</span><br/></li>
         <ul>
            <li>
               <a href="https://www.cdph.ca.gov/CDPH%20%20Document%20Library/ControlledForms/%20cdph6237.pdf">https://www.cdph.ca.gov/CDPH%20 Document%20Library/ControlledForms/ cdph6237.pdf​</a></li>
         </ul>
      </ul>
      <p style="line-height: 1.6;">If you have any questions, please contact CNDR at (916) 731-2500, or by email at&#160;<a href="mailto:CDSRBhelp@cdph.ca.gov">CDSRBhelp@cdph.ca.gov</a></p>
      <p style="line-height: 1.6;">
         <br/>
      </p>​

The state mandates that all cases of Parkinson's disease and other neurodegenerative disease* diagnosed or treated in California be reported to the registry. There is no provision for removal of neurodegenerative disease* patient information from the registry. To fulfill its purpose of providing information and determining incidence and prevalence for neurodegenerative disease,* it is vital for CPDR/CNDR records to be complete.

However, Parkinson's disease and other neurodegenerative disease* patients may request that their contact information be withheld from researchers accessing data. The law mandates that CPDR/CNDR data only be released for research purposes and that patient identity be kept confidential. Confidential information may be released for such research and patients can refuse to participate in any particular research study or all research studies.

<h3 style="line-height: 1.4;">Your rights.</h3>
      <p style="line-height: 1.6;">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 Parkinson's disease and other​ neurodegenerative disease research to the&#160;<a href="https://www.cdii.%20ca.gov/committees-and-advisory-groups/%20committee-for-the-protection-of-human%20-%20subjects-cphs/">Committee for the Protection of Human Subjects (CPHS)</a>&#160;(<a href="https://www.cdii.%20ca.gov/committees-and-advisory-groups/%20committee-for-the-protection-of-human%20-%20subjects-cphs/">https://www.cdii. ca.gov/committees-and-advisory-groups/ committee-for-the-protection-of-human - subjects-cphs/</a>). 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:</p>
      <div class="NewsItemContent" style="font-size: 18px;">
         <p style="line-height: 1.6;">Forms must be submitted to:<br/></p>
      </div>
      <blockquote style="padding: 0px; margin-bottom: 0px; margin-left: 40px; border: none;">
         <div class="NewsItemContent">
            <p style="line-height: 1.6;">
               <span style="font-size: 1em;">
                  <span style="font-weight: 700;">California Department of Public Health</span><br/><span style="font-weight: 700;">Office of Legal Services</span><br/>1415 L Street, Suite 500<br/>Sacramento, CA 95814&#160;</span></p>
         </div>
      </blockquote>
      <p style="line-height: 1.6;">
         <span style="font-size: 1em;">T</span><span style="font-size: 1em;">o access these forms please go to:</span><br/></p>
      <ul>
         <li>
            <span class="ms-rteStyle-TextBoldStyle">6240&#160;(Personal Information)​</span><br/></li>
         <ul>
            <li>​<a href="https://www.cdph.ca.gov/CDPH%20%20Document%20Library/ControlledForms/%20cdph6240.pdf">https://www.cdph.ca.gov/CDPH%20 Document%20Library/ControlledForms/ cdph6240.pdf</a></li>
         </ul>
         <li>
            <span class="ms-rteStyle-TextBoldStyle">6241&#160;(Parent, Guardian, or Personal Representative​)</span><br/></li>
         <ul>
            <li>​​<a href="https://www.cdph.ca.gov/CDPH%20%20Document%20Library/ControlledForms/%20cdph6241.pdf">https://www.cdph.ca.gov/CDPH%20 Document%20Library/ControlledForms/ cdph6241.pdf</a></li>
         </ul>
      </ul>
      <p style="line-height: 1.6;">If you have any questions, please contact CNDR at (916) 731-2500, or by email at&#160;<a href="mailto:CDSRBhelp@cdph.ca.gov">CDSRBhelp@cdph.ca.gov</a>.​​<br/></p>
   </div>
</div>

*"Neurodegenerative disease" may include, but is not be limited to, Alzheimer's disease, multiple sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

The same state law that mandates that all cases of neurodegenerative disease* diagnosed or treated in California be reported to the registry, also requires that Parkinson's disease and other neurodegenerative disease registry data only be released for specific research purposes relating to demographic, epidemiological, or other similar studies of Parkinson's disease and other neurodegenerative diseases*. Some of these studies may require that researchers obtain additional information from individual Parkinson's disease and other neurodegenerative disease* patients, and these researchers may contact patients to find out if they want to participate in a research study.

Patients have the right to refuse to participate in any research study without jeopardizing their current or future medical care.

Parkinson's disease and other​ neurodegenerative disease* patients may request that their contact information be withheld from researchers by contacting the CNDR at (916) 731-2500, or by email to <a href="mailto:CDSRBhelp@cdph.ca.gov">CDSRBhelp@cdph.ca.gov</a>.

*"Neurodegenerative disease" may include, but is not be limited to, Alzheimer's disease, multiple sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

There are several reasons to participate in Parkinson's disease and other neurodegenerative diseases* research to include, but is not limited to the following:
• It offers an opportunity to contribute to increasing knowledge about the prevention and optimal treatment of Parkinson's disease and other neurodegenerative diseases.*

• This research has the potential to further our understanding of Parkinson's disease and other neurodegenerative disease* including associated causes and risk factors.

• Expanding our understanding of Parkinson's disease and other​ neurodegenerative disease* has the potential to ultimately improve the lives of those affected and those at risk.

*"Neurodegenerative disease" may include, but is not be limited to, Alzheimer's disease, multiple sclerosis, Huntington's disease, and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

Providers are not required by law to inform their patients that their information is entered into this registry. CPDR/CNDR will make informational materials available on its website to facilitate patient notification by providers should they choose to do so.​