Thursday, August 11, 2022

California Parkinson’s Disease Registry

Welcome To The Health Information Exchange Gateway

Care Beyond the Clinic: Community Support Programs – Parkinson’s Disease

The California Department of Public Health shares data with many stakeholders, including providers, hospitals, laboratories, local health jurisdictions and federal agencies. To improve upon our data exchange, analysis, and reporting capabilities, CDPH has developed a secure health information exchange web application, the CDPH HIE Gateway. The Gateway will allow providers, hospitals and health information exchange organizations to register and manage public health data exchange with CDPH for specific types of reportable diseases and conditions.

California Funds Parkinsons Disease Registry With Advocacy And Support From The Michael J Fox Foundation

WASHINGTON and NEW YORK, July 14, 2021 /PRNewswire/ — The Michael J. Fox Foundation for Parkinsons Research today commended California Governor Gavin Newsom for signing the states FY 2021-2022 budget that includes $8.4 million to fund the California Parkinsons Disease Registry and to expand it to other neurodegenerative diseases over the next four years. The registrys goal is to acquire, record and analyze epidemiological data of the incidence and prevalence of disease that can identify Parkinsons hot spots throughout the state that will aid scientists in their work toward finding a cure.

An estimated 116,900 people live with Parkinsons in California the highest number of people with the disease in the country. We need collaborative investments in Parkinsons to move the dial on research and find a cure, said Ted Thompson, JD, MJFFs senior vice president of public policy. Public policy initiatives like this registry can have a direct and lasting impact on how the research community does its work data collection is absolutely critical so that researchers can view the full picture of a disease.

Scientific discovery is moving faster than ever before, and we need all hands on deck when it comes to Parkinsons research, said MJFF public policy advocate Michael Sweet, 52, of Lakewood, California. I live with Parkinsons disease and know the power this registry will have in educating researchers and providing the data they need.

California Parkinson’s Disease Reporting

California Health and Safety Code 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinsonâs disease patients to report each case of Parkinsonâs disease to CDPH. Per recent legislation with CA SB97, beginning July 1, 2018, a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to Parkinsonâs disease patients must report each case of Parkinsonâs disease to the department, as prescribed. The California Parkinsonâs Disease Registry will be a statewide population based registry that will be used to measure the incidence and prevalence of Parkinsonâs disease.

  • Implementation
  • Create HIE account if necessary
  • Add Parkinson’s to your list of reportable diseases
  • Determine your method of Reporting
  • Manual Entry
  • Electronic Interface
  • Manual Entry
  • After registration, you will be notified when the manual entry portal is available to receive submissions.
  • No additional steps needed.
  • Determine method of transmission/connection to CPDR:
    • SOAP

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    Surprisingly Little Is Known About How Parkinsons Disease Is Distributed Among Different Population Groups And Whether The Patterns Of Disease Are Changing Over Time Californias Large And Diverse Population Makes It Ideal For Providing Important Information About This Disease Cpdr Will Expand Our Understanding Of Parkinsons Disease To Ultimately Improve The Lives Of Those Affected

    This registry is a critical data collection effort that could truly transform Parkinsons care and treatment. It could one day be pivotal for finding a cure.

    Please call, email, and tweet Governor Newsom and ask him to sign A.B. 715 dont let special interests kill this important Parkinsons registry! The Michael J Fox Foundation has created an action alert to easily contact the governors office, visit their site here and let your voice be heard!

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    Michael J Fox Foundation Announces $380000 In Funding

    11/12/20

    The Michael J. Fox Foundation for Parkinson’s Research announced today it is granting $380,000 in extension funding to the California Parkinson’s Disease Registry to be used through June 30, 2021. The investment comes after Governor Gavin Newsom signed a bill to extend the registry by one year. The CPDR was created in 2004, and funding for 2021 was nearly discontinued due to COVID-related financial priorities in the state. In alignment with its mission to accelerate Parkinson’s research, MJFF has allocated gap funding to support the continuation of this critical work.

    The California Parkinson’s Disease Registry is responsible for conducting epidemiological assessments of the incidence and prevalence of Parkinson’s disease throughout the state. By collecting health information on the estimated 116,900 individual cases of PD in California, researchers can monitor and identify connections to environmental and chemical exposures and deepen our understanding of the disease.

    “This registry is a critical data collection effort that could transform Parkinson’s care and treatment,” said Todd Sherer, PhD, MJFF CEO. “We are glad that we can fill this gap in research funding, and we will continue to work with legislators to build and support programs and policies that serve people and families with Parkinson’s.”

    About The Michael J. Fox Foundation for Parkinson’s Research

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    California Funds Parkinson’s Disease Registry With Advocacy And Support From The Michael J Fox Foundation

    – California Governor Newsom signs funding bill including $8.4 million over four years to accelerate data collection effort toward a Parkinson’s cure

    – In addition to funding hundreds of millions in scientific research in the state, the Foundation has provided gap funding and advocacy efforts for the California registry

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    Mandatory Public Health Reporting

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    The Alameda County Public Health Department Division of Communicable Disease Control & Prevention responds to reports of communicable diseases in Alameda County. Physicians and health care providers are legally required by Title 17 of the California Code of Regulations to report suspected, lab-confirmed, and clinical diagnoses of specific diseases and conditions within specified time frames to the clients county of residence.

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    The California Parkinsons Disease Registry

    Dear Friends,

    Please take a minute to call or write the legislature in support of the funding of the CALIFORNIA PARKINSONS REGISTRY. This registry will gather basic information from diagnosed Parkinsons patients and allow researchers to identify the causes of the disease and its progression, and lead to PREVENTION and a CURE. The information gathered from the Registry will be tremendously helpful to researchers, saving us precious TIME and RESEARCH DOLLARS in our efforts on behalf of patients and their families.

    The pioneering work of UCLA scientists has shown that there is a correlation between environmental toxins such as pesticides, and Parkinsons disease, as well as the involvement of genetic factors. In 2004, Governor Schwarznegger signed into law the establishment of the California Parkinsons Disease Registry. However, budget constraints prevented the funding for the Registry.

    THE LEGISLATURE ARE MEETING AGAIN TO DETERMINE WHETHER THE REGISTRY SHOULD BE FUNDED. PLEASE TAKE A MOMENT TO WRITE OR CALL THEM IN SUPPORT OF FUNDING before May 1. I have attached a sample letter, which you can use to contact them. There are also a couple of fact sheets about the registry. To hear an interview about it, Please go to , then click on Click here for podcasts!

    Senator Holly J. Mitchell, Chair

    Senate Subcommittee #3 on Health and

    Human Services

    An Update On Parkinsons And Public Policy

      From the Michael J. Fox Foundation:

      BREAKING: Big win for the PD community earlier this week, California Governor Gavin Newsom signed the California budget bill that provides over $8.4 million to fund the California Parkinsons Disease Registry along with an expansion to a broader Neurodegenerative Disease Registry! MJFF spearheaded a coalition that included ALS, Huntingtons disease, Multiple Sclerosis, Alzheimers disease, the American Brain Coalition, and the American Academy of Neurology to support the expanded registry. The sunset provision on the PD registry was also eliminated. Read the MJFF press release here.

      In Massachusetts, MJFF efforts were successful in getting PD registry language in the state budget that late last week was sent to Governor Charlie Baker for his signature. We have urged the governor to sign the budget and establish the Massachusetts Parkinsons Disease Registry.

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        California Parkinsons Disease Registry

        Study Rationale: This project will support operations and enhancement of the California Parkinsons Disease Registry for one year. CPDR captures and stores information on all Parkinsons disease cases diagnosed or receiving treatment in California. This information is used to expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.

        Hypothesis:CPDR seeks to answer the question: How can information on all Parkinsons disease cases best be collected to provide a rich data source that can be used to improve Parkinsons disease prevention, survival, treatment and research?

        Study Design:We will work with health care providers and health systems to improve the quality of Parkinsons disease registry data statewide. We will also work with national partners to agree on common methods for data collection so different parts of the nation can better collaborate and learn from each other. Finally, while protecting the privacy and confidentiality of all people whose information is in the registry, we will facilitate use of Parkinsons disease registry data to improve prevention, care, treatment and research.

        Impact on Diagnosis/Treatment of Parkinsons Disease: The project will result in enhanced data and information available to better prevent, diagnose and treat Parkinsons disease.

        Calredie Electronic Case Reporting

        Michael J. Fox Foundation Grant Extends The California ...

        Visit the California Reportable Disease Information Exchange eCR Registration Portal for Electronic Case Reporting with the California Department of Public Health.

        As of July 1, 2017, CalREDIE declared readiness to meet the CMS Promoting Interoperability Program requirements for electronic case reporting at the California Department of Public Health . For questions regarding PIP requirements for CDPH please email: .

        To register for CDPH CalREDIE eCR, visit the California Reportable Disease Information Exchange eCR Registration Portal. Healthcare providers within Los Angeles, San Diego, and Solano counties please check in with your local health department for instructions on how to register and submit eICRs for your jurisdiction.

        For submitters who have already registered for eCR and/or have been submitting data prior to November 1, 2021, no further action is needed.

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        Process For Data Submission

        Immunization Reporting

        1. For questions or exemption letters email:

        2. Submit data to Health Information Exchange Gateway – CAIR.

        Electronic Lab Reporting

        1. For questions or exemption letters email:

        2. Submit data to Health Information Exchange Gateway – CalREDIE.

        Electronic Case Reporting

        1. For questions or exemption letters email:

        2. Register intent to submit data to CalREDIE.

        Syndromic Surveillance Reporting

        1. For questions or exemption letters email:

        Specialized Registries Other Specialized Registries Cancer Case Reporting

        YES

        2. Submit data to Health Information Exchange Gateway.

        Genetic Disease Screening Program

        Enrolling with GDSP does not currently meet specific Meaningful Use measure/criteria. If you are a Perinatal Licensed Health Facility and would like to receive Newborn Screening test results electronically, please visit the CDPH HIE Gateway registration portal to enroll in GDSP HIE.

        California Parkinsons Disease Registry

        YES

        Providers to use guidelines provided by the California Parkinsons Disease Registry , a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinsons disease.

        The California Parkinsons Disease Registry Pilot Project 2006

        The California Parkinsons Disease Registry pilot project established in Central California to examine the feasibility of establishing a Parkinsons disease registry for the entire state of California. PD cases, along with date of diagnosis, ICD-9 codes, and demographic information, was ascertained from 70 medical facilities in Fresno, Kern, and Tulare Counties. Cases of PD denoted by an ICD-9 code of 332.0 were used to determine crude, and gender and age specific incidence rates of PD in each county from 2007-2010. An additional random sample of 358 PD patient records were selected for further analysis of clinical symptoms. When validated against UK Parkinsons Disease Society Brain Bank Research Center criteria diagnostic criteria, according to the charts, 67.8% of all reported cases were considered to be correctly diagnosed as a parkinsonian syndrome of these 51.2 % were considered to be definite cases of idiopathic PD.

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        nearly was discontinued in 2021 due to COVID-19-related financial priorities. The MJFF helped bridge this funding gap with a $380,000 contribution earlier this year.

        Public policy initiatives like this registry can have a direct and lasting impact on how the research community does its work data collection is absolutely critical so that researchers can view the full picture of a disease, Thompson said.

        The CPDR will use the new funding to expand its data collection efforts for Parkinsons and other neurological disorders. The MJFF also encourages expanding data collection efforts beyond Parkinsons through a neurological disease coalition.

        Along with its support for research programs at various California institutions, MJFFs contribution to the CPDR brings its investments to Parkinsons research in the state to more than $190 million.

        Data collected for this registry also will be used to assist national Parkinsons data collection efforts, such as the National Neurological Conditions Surveillance System from the U.S. Centers for Disease Control and Prevention.

        Scientific discovery is moving faster than ever before, and we need all hands on deck when it comes to Parkinsons research, said Michael Sweet, an MJFF public policy advocate in Lakewood, California.

        I live with Parkinsons disease, he added, and know the power this registry will have in educating researchers and providing the data they need.

        Before Beginning The Gateway Registration Process Make Sure To:

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      • Check the California Public Health Electronic Reporting Capacity Matrix to see whether your Local Health Jurisdiction prefers you to use the CDPH HIE Gateway or a local solution for Public Health Reporting.

      • Set aside 15-20 minutes to complete the process – data will not be saved unless registration is completed.

      • Have all your Organization/Site and EHR vendor/IT technical support contact information available . With respect to MU, it is not necessary for individual EPs to register at the Gateway as CDPH will acknowledge MU-qualifying public health reporting per Site.

      • Define how your Site will submit data to the Gateway :

      • Directly to the Gateway from your EHR system
      • Through an intermediary facility
      • Will operate as an HIE/Sending Facility and submit data on behalf of other Sites
      • When you have assembled all this necessary information and are ready to begin Gateway registration, click below on the type of public health data you wish to submit and proceed with registration. Once you have registered to submit one public health data type , registration for submission of other data types will take less time.

        If you have any questions specific to Meaningful Use, please send your inquiries to this email address:

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        California Parkinson’s Disease Registry

        California Health and Safety Code 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinsonââ¬â¢s disease patients to report each case of Parkinsonââ¬â¢s disease to CDPH. Per recent legislation with CA SB97, beginning July 1, 2018, a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to Parkinsonââ¬â¢s disease patients must report each case of Parkinsonââ¬â¢s disease to the department, as prescribed. The California Parkinsonââ¬â¢s Disease Registry will be a statewide population based registry that will be used to measure the incidence and prevalence of Parkinsonââ¬â¢s disease.

        Surprisingly, little is known about how Parkinson’s Disease is distributed among different population groups and whether the patterns of disease are changing over time. California’s large and diverse population makes it ideal for providing important information about this disease. CPDR will greatly expand our understanding of Parkinson’s disease and ultimately improve the lives of those affected.

        Quick Access Guide to register into CA Parkinson’s Disease Registry.

        Important Dates

        California Parkinson’s Disease Registry Northern California Informational Meeting

        Join us for a FREE informational meeting. Find out how to report Parkinson’s disease case information to CPDR.

        When: Tuesday, May 29, 1:00 – 4:00 PM

        Where: Sierra Health Foundation, Sacramento

        California Health and Safety Code 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to the California Department of Public Health beginning July 1, 2018. The CPDR will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

        Currently, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time. California’s large and diverse population makes it ideal for providing important information about this disease. CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.

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