HIE Gateway Frequently Asked Questions
If you have any more questions specific to the Public Health-related Meaningful Use objectives, please send your inquiries to MeaningfulUse@cdph.ca.gov. For general questions related to Meaningful Use and the CMS EHR Incentive Program, please contact CMS. If you have technical questions or problems related to the CDPH HIE Gateway, please send to HIEhelp@cdph.ca.gov.
Do I need to register at the CDPH HIE Gateway?
If you intend to submit public health data to a state program, you may need to register at the Gateway. Many providers, professionals, and organizations that are required by law or regulation to submit specific health data to public health agencies will need to register. Other Organizations/Sites will need to register in order to submit public health data to qualify for 'Meaningful Use' incentive payments.
For information on how to register, please refer to the California Public Health Electronic Reporting Capacity Matrix
I can't log in. The user name and password I chose do not work.
Please review the following helpful tips to troubleshoot log in issues.
- Verify that you have clicked the email confirmation link that was sent to you.
- Check to make sure your user name matches what is listed as user name on your confirmation email.
- Your password is at least 8 characters in length and includes a special character (e.g. @, #, $, etc.).
- Check to see if CAPS lock is on; passwords and user names are case sensitive.
- Try closing your browser, returning to hie.cdph.ca.gov and attempting to log in one more time.
I already have a CAIR Portal account, do I need to register with HIE Gateway?
If you already registered at the CAIR Portal prior to October 1, 2013 and do not intend to submit other types of public health messages, you do not need to register at the Gateway. You will be able to continue to use your CAIR Portal data exchange credentials at the Gateway. Eventually the CAIR Portal data will be migrated to the Gateway and you will be asked to login to the Gateway and confirm that the migrated information is correct.
When will immunization data be available to view on your site?
The Gateway is designed for data submission only and does not allow viewing of immunization information. You will need to obtain web access to CAIR to view any submitted patient data.
Who should register with CalREDIE?
Any facility or laboratory submitting electronic laboratory results reportable to public health agencies under the requirements of California Code of Regulations Title 17 Section 2505 should register with the CDPH HIE Gateway to exchange data if they reside in a Local Health Jurisdiction that uses CalREDIE. A party submitting CMR (Confidential Morbidity Reports) for compliance with Title 17 Section 2500 should contact the local health department to register with CalREDIE for a Provider Portal account.
Who from our department should register with the HIE CDPH Gateway?
It is best if the individual who registers with the Gateway is the facility point of contact for regular ELR related discussions with the CalREDIE ELR analyst.
What email should be used when registering with the CDPH HIE Gateway?
It is best to use an email address that connects to your facility’s lab reporting team; the email for your facility point of contact is acceptable.
After having registered with another program in the gateway (such as CAIR), what additional steps are required to register for CalREDIE?
The facility will need to complete the CalREDIE Program Enrolment Page. Approval for testing and instructions for submitting ELR data will be sent to the ELR contact for your facility. The digital certificate and credentials your facility uses for CAIR can also be used for CalREDIE data exchange.
What happens after registration?
A CalREDIE team member reviews the registration information to confirm that the facility meets requirements necessary for submitting ELR for Title 17 Section 2505 reportable conditions. If requirements are met, approval is sent via email to test. Following approval, the Gateway system will send secure emails containing a digital certificate to connect and test along with instructions necessary for submitting data.
How can ELR messages be sent and how often?
Please send ELR messages as single files or batched files at least once a day. It is allowable to send as soon as results are achieved and confirmed.
What type of secure messaging service is used?
SOAP messaging is used and acts as a wrapper which includes information (metadata) such as sender ID, receiver ID, and messaging path. The HL7 ELR message is the payload.
How can I begin preparing for the implementation of eCR?
- Check the CalREDIE eCR Informational Webpage for information and updates.
- Determine your EHR system’s readiness to generate an eICR in accordance with the HL7 CDA® R2 Implementation Guide: Public Health Case Report, Release 2 - US Realm - the Electronic Initial Case Report (eICR) published standard.
- Register at the California Reportable Disease Information Exchange (CalREDIE) eCR Registration Portal if you intend to send electronic initial case reports (eICR) for Title 17 Section 2500 reportable conditions to the California Reportable Disease Information Exchange (CalREDIE) within the CDPH Division of Communicable Disease Control. 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.
How do I attest that I am meeting the Meaningful Use Stage 3 (MU3) measure requirement of being actively engaged with a Public Health Agency (PHA) with the intent to submit electronic initial case reports (eICR) via certified EHR technology (CEHRT)?
- Register your intent to submit electronic initial case reports (eICR) at the California Reportable Disease Information Exchange (CalREDIE) eCR Registration Portal.
When can I register for eCR?
Beginning on January 1, 2018.
How do I register/enroll for CalREDIE eCR?
Visit the California Reportable Disease Information Exchange (CalREDIE) eCR Registration Portal for Electronic Case Reporting (eCR) with the California Department of Public Health.
What is Meaningful Use?
Meaningful Use is a set of standards defined by the Centers for Medicare and Medicaid Services (CMS) Incentive programs that govern the use of electronic health records that allow eligible providers and hospitals to earn incentive payments by meeting specific criteria. The goal of meaningful use is to promote the spread of electronic health records to improve health care in the United States.
Legislation: The American Recovery Reinvestment Act (ARRA) and Health Information Technology for Economic and Clinical Health Act (HITECH) in the stimulus law were signed on February 17, 2009, by President Obama and provide $19.2 billion in Health Information Technology (HIT) spending. ARRA HITECH legislation provides that eligible professionals and hospitals who demonstrate “meaningful use” of certified electronic health record technology are eligible for incentive payments. The adoption of EHR and HIT in high priority areas such as electronic prescribing, interoperable electronic health records and quality measure reporting can improve patient safety and the quality of healthcare.
What are the benefits of Electronic Health Records (EHR)?
Complete and accurate information: With electronic health records, providers have the information they need to provide the best possible care. Providers will know about their patients and their health history before they walk into the examination room.
Better access to information: Electronic health records facilitate greater access to the information providers need to diagnose health problems earlier and improve the health outcomes of their patients. Electronic health records also allow information to be shared more easily among doctors’ offices, hospitals and across health systems, leading to better coordination of care.
Patient empowerment: Electronic health records will help empower patients to take a more active role in their health and in the health of their families. Patients can receive electronic copies of their medical records and share their health information securely over the Internet with their families.
How does EHR benefit the cancer registries?
Population-based public health central cancer registries across the United States and most of Canada are mandated to collect complete and timely cancer diagnostic, treatment and outcome data from hospitals, physicians’ offices, treatment centers, clinics, laboratories and other sources. Recent shifts in cancer treatment away from hospital settings and towards ambulatory (non-hospital) healthcare settings are increasing the importance of ambulatory healthcare providers’ data for cancer surveillance. As ambulatory healthcare providers adopt modern EHR systems, the opportunity to automate cancer registry reporting from ambulatory healthcare provider settings is also increasing and becoming more feasible.
Here are some of the benefits of EHR::
- Improved accuracy and completeness of cancer surveillance data impact all areas of public health interventions.
- Data also provide baseline measures and performance measures for cancer-related interventions designed to reduce cancer incidence or improve early detection.
- Identification of disparities among various population subgroups, in stage at diagnosis or in treatment received, can inform interventions to reduce the cancer morbidity and mortality on disadvantaged populations.
What are the specifications for electronic reporting from ambulatory healthcare providers’ EHR systems to public health central cancer registries?
The standard used in electronic reporting from ambulatory healthcare providers’ office to central cancer registry is Health Level Seven (HL7) Clinical Document Architecture (CDA). This document is designed to guide EHR vendors and public health central cancer registries in the implementation of standardized electronic reporting.
An implementation guide for ambulatory healthcare provider was developed through a collaborative effort of the Centers for Disease Control and Prevention (CDC), National Cancer Institute (NCI) Surveillance, Epidemiology, and End–Results (SEER) Program, public health central cancer registries, EHR vendors, and the North American Association of Central Cancer Registries (NAACCR).
The implementation guide can be found in the following link: Implementation Guide for Ambulatory Healthcare Provider Reporting to Central Cancer Registries.
Will registries need to develop a local specification for the Health Level Seven (HL7) Clinical Document Architecture (CDA) physician reporting document?
State cancer registries do not need to develop local specifications. They should use the standard adopted by the Office of the National Coordinator for Health Information Technology (ONC), the Implementation Guide for Ambulatory Healthcare Provider Reporting to Central Cancer Registries [PDF-1.9MB], for eligible professionals (EPs) to report cancer data. If your state has requirements that are not included in this standard, please work with CDC to standardize these elements. Please be aware that EHR vendors will not be required to include these additional data elements. CDC will work with state cancer registries to identify any additional data elements that were not included for MU Stage 2. CDC plans to update the national specification to include consistent data elements in the MU Stage 3 standard.
Is a timing element described in the cancer reporting process as to when data exchange will occur?
The Implementation Guide for Ambulatory Healthcare Provider Reporting to Central Cancer Registries (commonly called the Cancer Implementation Guide) requires a report to be sent every time the EHR identifies an encounter with cancer as the first-listed diagnosis.
What’s the difference between a “software vendor”, and the “software name and version”?
- An example of a software vendor: Microsoft
- An example of a software name and version: Windows 7, or Internet Explorer 8.0
What are the goals of the meaningful use?
- Improve quality, safety, efficiency and reduce health disparities
- Engage patients and families in their health care
- Improve care coordination
- Improve population and public health
- Maintain privacy and security
Where can I find more information on meaningful use?
What is a Cancer Registry?
A cancer registry is a system for collecting, storing, and studying data on persons with cancer. Cancer registries are needed to measure the burden of cancer in our communities, to help identify the causes of cancers, and to find cures for these diseases.
California has a comprehensive cancer registry that covers the entire state. It is considered one of the best cancer registries in the world. State law requires that every cancer diagnosed in California be reported to the California Department of Public Health (CDPH) which manages the California Cancer Registry (CCR).
How does the California Cancer Registry (CCR) get information on cancer cases?
The law requires doctors, hospitals, and other facilities that diagnose and treat cancer patients to report information on cancer cases to the CCR. The CCR and regional registries work with local reporting facilities to ensure that information on cancer cases is complete and accurate.
The CCR collates all the data, performs additional quality control, and analyzes the data on a statewide basis. At each step of the process, strict procedures are in place to protect patient confidentiality.
What data does the CCR collect?
All data collected by the CCR are obtained directly from cancer patients’ medical records and include demographic, diagnostic, and treatment information on individual cancer cases.
- Demographic data include: patient’s name, address at time of diagnosis, sex, race, and age at diagnosis.
- Diagnostic data include: type of cancer (such as breast cancer) and stage of disease at time of diagnosis.
- Treatment data include: whether the patient had surgery, radiation, or chemotherapy as the first course of treatment.
The CCR does not interview patients.
What are the data used for?
CCR data are used to:
- Monitor the number of new cancer cases and cancer deaths over time;
- Examine disparities in cancer risk, treatment and survival;
- Examine treatment choices and other predictors of survival;
- Measure the success of cancer screening programs;
- Respond to public concerns and questions about cancer; and
- Conduct research to find the causes and cures of cancer.
Researchers have used CCR data to:
- Analyse geographic, racial/ethnic, and occupational differences in cancer risk;
- Evaluate the quality of medical care received by cancer patients; and
- Examine patient survival with respect to cancer type, extent of the disease, demographic characteristics, and other important factors.
What does the CCR do?
The mission of the CCR is to serve the public by collecting state-wide data, conducting surveillance and research into the causes, controls, and cures of cancer and communicating results to the public.
The CCR monitors the occurrence of cancer among Californians, both incidence (new diagnoses) and mortality (deaths). The CCR, which is operated by the CDPH and ten regional cancer registries, is an essential tool for the prevention and control of cancer in California.
By law (Health and Safety Code, Section 103885), all new cancer cases diagnosed in California residents since January of 1988 have been reported to the CCR, with strict guidelines to maintain patient confidentiality.
Is the information kept confidential?
Absolutely, the CCR was established in 1985 to serve as a key resource in the state for research into the causes and cures of cancer. It has a productive record of using CCR data for research and program evaluation to improve the spectrum of cancer control in California, including prevention, diagnosis, treatment and quality of life. CCR has very stringent policies and procedures to ensure that cancer data reported are maintained with the highest degree of confidentiality and privacy.
Cancer researchers must go through a rigorous process to access any CCR data. The CCR will only release patient contact information to qualified researchers under tightly controlled circumstances where the research has first been approved by the California State Committee for the Protection of Human Subjects (CPHS) Institutional Review Board. Research proposals are evaluated by CPHS to ensure patients’ rights are protected and the research justified. Additionally, a federally approved Institutional Review Board (IRB) at the researcher’s institution must also approve the research proposal. This IRB will also ensure that patient rights are monitored and protected.
When am I required to submit a blood lead test report?
By state law, all blood lead tests performed on a specimen of human blood drawn in California shall be reported to CDPH.
Currently, all hospitals and providers carrying out blood lead analysis should report through the existing CDPH Childhood Lead Poisoning Prevention System.
At this time, CDPH is not able to receive blood lead laboratory test results for Public Health MU objective in the EHR Incentive Program.
Please contact EBLRSupport@cdph.ca.gov for information on how to electronically report these blood lead tests to the Clildhood Lead Poisoning Prevention Branch (CLPPB) or if you have other questions about blood lead reporting.
Is the HIE Gateway able to receive syndrome surveillance data?
CDPH is unable to receive syndromic surveillance data at this time. Please check with your Local Health Jurisdiction for directions on syndromic surveillance data submissions within your county. LHJ contact information can be found at this link: http://hie.cdph.ca.gov/lhj-matrix.html.
Background:
The California Department of Public Health, a qualified Public Health Agency, has determined that the California Smokers’ Helpline (Helpline) meets Meaningful Use Stage 2 (MU2) criteria as a Specialized Registry. This determination provides an opportunity for Eligible Providers in California to make Meaningful Use of Electronic Health Records (EHR) by electronically referring tobacco using patients to the Helpline. The following are answers to frequently asked questions about this program
When will the registry be available to Eligible Providers in California?
Eligible Providers may register intent at any time by completing this registration form and emailing it to the California Tobacco Control Program email address at ctcpinbox@cdph.ca.gov. The Helpline will begin reviewing and responding to requests on a case-by-case basis beginning in September 2016.
Is reporting to this registry mandatory or voluntary?
Reporting is voluntary. However, Eligible Providers who wish to demonstrate compliance with this provision of MU2 should consistently screen all patients for tobacco use, get their patients’ consent, and refer them to the Helpline.
What data elements are required from the registry?
Required data elements include the referring facility and provider’s name, the date and time of the referral, and patient’s name and telephone number. Optional data elements include the patient’s date of birth, gender, race, address, identification number such as medical record number, alternate telephone number, language preference, and whether the person being referred is a “household smoker” (i.e., a person who is exposing the patient to secondhand smoke as opposed to the patient him or herself).
How will the registry utilize the data?
The Helpline will use patient data submitted by an Eligible Provider to: (1) establish a unique record in the registry for that individual; (2) contact the patient for tobacco cessation treatment, which may include telephone counseling, self-help materials, nicotine replacement therapy, access to online content, online chat, a text messaging program, and recorded messages; (3) conduct population research on tobacco use and cessation in California using aggregate tobacco use information; and 4) better understand the larger trends in the tobacco using population to influence cessation on a population level.
What is the transmission method used?
Various transmission methods can be used. The Office of the National Coordinator for Health Information Technology (ONC) recommends information be exchanged via DIRECT, which functions like secure e-mail and is HIPAA compliant. It was created to provide a simple and standardized method that could be used by providers to send authenticated, encrypted health information directly to known, trusted recipients securely over the internet. Lower Layer Protocol (LLP) can also be used for the exchange, integration, sharing, and retrieval of electronic health information. HL7’s Version 2.x (V2) messaging standard is the workhorse of electronic data exchange in the clinical domain and a widely implemented standard for healthcare in the world. Other acceptable and secure methods of transferring data to the Helpline including SOAP , HTTPS , SFTP) may be used and will be assessed on a case-by-case basis.
What is the frequency of transmission?
Information is exchanged in real time whenever certain pre-determined events take place. Eligible Providers transmit individual referrals to the Helpline whenever they screen and approve a patient for referral. Hence, the EHR system automatically identifies an encounter that indicates that a patient is a smoker; the patient is willing to receive help with quitting and the patient has given consent to send information to the Helpline. When applicable, the Helpline will transmit individual feedback messages to the referring provider whenever the patient reaches pre-determined milestones in the tobacco cessation treatment process. This allows providers to monitor the patient’s care and progress.
What is the Genetic Disease Screening Program (GDSP)?
Genetic Disease Screening Program of the California Department of Health works to protect and improve the health of all Californians. We run the largest screening program in the world and set the standard in delivering high-quality, cost-effective genetic services to all Californians. The mission of the Genetic Disease Screening Program is “To serve the people of California by reducing the emotional and financial burden of disability and death cause by genetic and congenital disorders.”
The Genetic Disease Screening Program performs the following tasks to support its mission:
- Screens newborns and pregnant women for genetic and congenital disorders in a cost-effective and clinically effective manner. The screening programs provide testing, follow-up and early diagnosis of disorders to prevent adverse outcomes or minimize the clinical effects.
- Ensures quality of analytical test results and program services by developing standards and quality assurance procedures, and monitoring compliance with them.
- Fosters informed participation in its programs in an ethical manner through a combination of patient, professional, and public education, and accurate and up-to-date information and counseling.
- Provides ongoing critical review, testing, and evaluation of existing programs to ensure that program objectives and goals are being met.
- Develops programs to adopt new methods and implement new services that further enhance the effectiveness and efficiency of current and future prevention programs.
- Promotes use of high-quality consumer education materials on genetic disorders, screening for birth defects and genetic services.
What is the Newborn Screening Program?
The Californian Newborn Screening Program is one of the public health programs administered by GDSP that screens all babies for many serious diseases. California has a law that requires that all babies be screened for 80 different diseases. If not found and treated early, many of the diseases can cause serious and permanent health problems, severe developmental delay and even death.
What is the Prenatal Screening Program?
The activities of the California Prenatal Screening Program (PNS) are focused on detecting birth defects during pregnancy. PNS is working to assure prenatal screening services and follow-up diagnostic services, where indicated, are available to all pregnant women in California. The Prenatal Screening Program provides pregnant women with a risk assessment for open neural tube defects (NTD), Down syndrome (trisomy 21), trisomy 18 and SLOS (Smith-Lemli-Opitz Syndrome) through one or two blood tests. The screening test indicates risk, but does not diagnose fetal birth defects. For women with screening results indicating a high risk for a birth defect, the Program provides free follow-up diagnostic services at State-approved Prenatal Diagnosis Centers (PDCs) (PDF). Services offered at these Centers include genetic counseling, ultrasound, and amniocentesis. Participation in the screening testing and follow-up services is voluntary. The cost of the testing through the Prenatal Screening Program is $207.
Who should register with GDSP?
Any facility, provider (physicians, doctors, and specialists), midwife, test labs and other health organizations that wish to receive GDSP health related information are eligible to register with GDSP.
What is health information exchange (HIE)?
HIE is the electronic movement of health-related information among organizations according to nationally recognized standards. The goal of health information exchange is to facilitate access to and retrieval of clinical data to provide safer, timelier, efficient, effective, equitable, patient-centered care.
What is Health Level 7 (HL7)?
HL7 is a messaging standard that enables clinical applications to exchange health related data; It is a “book of rules” detailing interfacing information that sets forth a framework for negotiating in interfacing.
What happens after enrolling?
A GDSP team member reviews the enrollment information to confirm that the healthcare provider meets the requirements necessary to submit and receive data. If requirements are met, an email is sent out notifying enrollment has been approved and further instructions will be given.
Can I receive NBS/PNS results through email?
For NBS, during the GDSP enrollment process you can choose to receive results through email.
PNS results are not shared electronically at this time but GDSP is working on adding this feature to the CDPH Gateway in the future.
Which Newborn Screening test results are sent by GDSP in the electronic HL7 file or email?
Currently, results for the following NBS tests are sent in the electronic HL7 file or email:
- Cystic Fibrosis
- Biotinidase Deficiency
- Galactosemia
- Primary Congenital Hypothyroidism
- Congenital Adrenal Hyperplasia
- MS/MS Acylcarnitine Panel
- MS/MS Amino Acid Panel
- Severe Combined Immunodeficiency (SCID)
- Hemoglobinopathies
- ALD
Do I still need to register with CDPH and enroll in GDSP if I am a HIE partner that currently shares data electronically with GDSP?
Yes, you will still need to register with CDPH and then enroll with GDSP.
Does enrolling with GDSP meet specific Meaningful Use measure/criteria to qualify for an incentive payment through the Medicare EHR Incentive Program administered by the Centers for Medicare & Medicaid Services (CMS)?
No. Enrolling with GDSP does not meet specific Meaningful Use measure/criteria at this time but helps organizations reduce paper based exchange and manual data entry and improve the quality of care.
What data will CPDR collect and what will the data be used for?
CPDR, a program of the California Department of Public Health, will be collecting diagnostic and treatment information on individual Parkinson’s disease cases from physicians and facilities providing care to Parkinson’s patients. CPDR will not interview patients. This data will be used to:
- Determine the incidence and prevalence of Parkinson’s disease in California
- Examine disparities in Parkinson’s disease risk
- Conduct demographic and epidemiological research and other studies of Parkinson’s disease
How does CPDR safeguard privacy and ensure data security? (Is patient information safe?)
Maintaining the confidentiality of persons whose medical data are reported to CPDR is mandated by law and is the highest priority in registry operations. Information about Parkinson’s 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 researchers will go through a rigorous process to access CPDR data including an approval process by both a state-certified institutional review board and the CPDR advisory committee. If their application is approved, they will receive only the required information for their approved purpose. CPDR will only release patient contact information to qualified researchers under tightly controlled circumstances. Policies and procedures for accessing confidential data for CPDR will be posted on the CPDR website when available.
What laws protect patients and ensure confidentiality of data?
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.
Is there anything the patient must do to comply, or is this all done by doctors?
All reporting requirements are directed to providers so there is nothing patients must do.
If I have multiple doctors, which one reports, or are they all required to report?
According to statute, all providers diagnosing or treating a patient must report to the state, regardless of reporting by another provider.
What happens to the data?
CPDR 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. These summary reports do NOT contain any information about individual Parkinson’s cases. The data in these reports are combined into groups for analysis.
The same law that mandates that all cases of Parkinson’s disease diagnosed or treated in California be reported to the state, also requires that Parkinson’s disease registry data only be released for specific research purposes relating to demographic, epidemiological, or other similar studies of the CPDR. The law mandates that patient identity be kept confidential, but also that confidential information may be released for research as described above.
CPDR takes the protection of a patient’s confidential health information very seriously.
CPDR will only release information to qualified researchers under tightly controlled circumstances where the research has first been approved by both a state-certified institutional review board and the CPDR advisory committee. 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 patients may request that their contact information be withheld from researchers by contacting CPDR at (916) 731-2500, or by email to CPDRhelp@cdph.ca.gov
Will the California Department of Motor Vehicles (DMV) have access to or be provided with CPDR information?
No.
Will I be able to access my personal data once it has been submitted to the registry?
Yes. Individuals will have the right to access records containing their personal information maintained by CPDR 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 patients may request their CPDR record by contacting CPDR at (916) 731-2500, or by email to CPDRhelp@cdph.ca.gov
How will I be able to get a copy of my CPDR record/information?
CPDR records will only be released to those who are legally authorized to obtain a patient’s confidential information (i.e., self, surviving spouse, conservator, etc.) CPDR will require all patient record requests be made in writing with proof of identity. CPDR will provide an application form for this process. The application will be available on the CPDR website.
Can I remove my name and personal information from the CPDR?
The state mandates that all cases of Parkinson’s disease diagnosed or treated in California be reported to the registry. There is no provision for removal of Parkinson’s disease patient information from the registry. To fulfill its purpose of providing information and determining incidence and prevalence for Parkinson’s disease, it is vital for CPDR records to be complete.
However, Parkinson’s disease patients may request that their contact information be withheld from researchers accessing data. The law mandates that CPDR 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.
Parkinson’s disease patients may request that their contact information be withheld from researchers by contacting CPDR at (916) 731-2500, or by email to CPDRhelp@cdph.ca.gov
Are Parkinson's disease patients asked to participate in research studies?
The same state law that mandates that all cases of Parkinson’s disease diagnosed or treated in California be reported to the registry, also requires that Parkinson’s disease registry data only be released for specific research purposes relating to demographic, epidemiological, or other similar studies of Parkinson’s disease. Some of these studies may require that researchers obtain additional information from individual Parkinson’s 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 patients may request that their contact information be withheld from researchers by contacting the CPDR at (916) 731-2500, or by email to CPDRhelp@cdph.ca.gov
Why participate in Parkinson's disease research?
- It offers an opportunity to contribute to increasing knowledge about the prevention and optimal treatment of Parkinson’s disease.
- This research has the potential to further our understanding of Parkinson’s disease including associated causes and risk factors. Expanding our understanding of Parkinson’s disease has the potential to ultimately improve the lives of those affected and those at risk.
How or will I be notified when information about me is added to the registry?
Providers are not required by law to inform their patients that their information is entered into this registry. CPDR will make informational materials available on its website to facilitate patient notification by providers should they choose to do so.
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