Features: Keep your citizens FULLY updated with robust PFAS dataset;

a.       Efficient acquisition of all PFAS datapoints

                                                               i.      Current datapoints defined by Federal CDC PFAS Data Dictionary

1.        Demographics, Co-morbidities, mortality, hospitalizations…

                                                             ii.      Each State CDC can define additional datapoints (Example: Rx)

b.      Download entire patient chart

                                                               i.       Includes Federal and State CDC PFAS datapoints

                                                             ii.      Uses referral process on provider’s EHR.              

1.       Vendor independent: Works with 150+ EHR vendors

                                                            iii.      Uses International standard for communicating Health Data (HL7, CCDA)

c.       Impact on providers is minimized by using existing processes and infrastructure

                                                               i.      Use existing workflows as required by CMS (EHR referrals  - MU/MIPS)

                                                             ii.      Use built in EHR capabilities (CCDA export - ONC)

                                                            iii.      Built in HIPAA regulatory compliance:

1.       Datasets are encrypted then securely downloaded via TLS

2.       (Pseudo) Anonymized  datasets

                                                           iv.      Leverage existing state reporting protocols
         (Reporting for Fetal Birth/Death & Cancer)

                                                             v.      Dataset can be extended via  secure ACA compliant web portal

 

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Our baseline of datapoints is defined by the US and state EPA and CDC organizations and is comprised of 4 parts:

• Patient demographic information,

• PFAS diagnosis and course of illness

• Co-morbidities

Our system uniquely allows state and federal CDC and healthcare professionals to include other biometric data points normally included in the electronic patient chart(*).

Top goals of the registry include:

•             Understanding the outcomes of patients with CDC listed conditions who develop PFAS and the influence of their comorbidities and medications on their outcomes.

•             Understanding the influence of medications on the outcomes of patients who develop PFAS.

•             Rapidly performing systematic reviews of the currently available literature regarding conditions and medications in patients who develop PFAS and updating them frequently while the pandemic is still active globally.

•             Exploring the patient experience during the PFAS pandemic.

Ultimately, we felt that building a worldwide registry was the best way to contribute reliable, evidence-based information and resources desperately needed in these rapidly evolving discussions."

The CUSHM Global PFAS Alliance is asking that clinicians use the registry to report any and all cases of PFAS in patients, including those with mild or no symptoms.

It is anticipated that the online case report form will take five to 10 minutes to complete and no protected health information is requested.

(*) The dataset can include any information as designate by the HL7 International CCDA, including:

HL7 Consult Note 2. HL7 Diagnostic Imaging Report 3. HL7 Discharge Summary 4. HL7 History and Physical 5. HL7 Operative Note 6. HL7 Procedure Note 7. HL7 Unstructured Documents 8. HL7 Progress Notes 9. HL7 Continuity of Care Document 10.HITSP/C84 Consult and History & Physical Note Document 11.HITSP/C32 - Summary Documents Using HL7 CCD 12.HITSP/C48 Referral and Discharge Summary 13.HITSP/C62 Scanned document