Nebraska Parkinsons Disease Registry for Public Health Applications - - PowerPoint PPT Presentation

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Nebraska Parkinsons Disease Registry for Public Health Applications - - PowerPoint PPT Presentation

May 21, 2023 328 likes •442 views

Nebraska Parkinsons Disease Registry for Public Health Applications Jill Krause Parkinsons Disease Registry Coordinator 2017 UNMC Parkinsons Update Conference October 21, 2017 Helping People Live Better Lives. 1 History of the

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Helping People Live Better Lives.

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Nebraska Parkinson’s Disease Registry for Public Health Applications

Jill Krause Parkinson’s Disease Registry Coordinator

2017 UNMC Parkinson’s Update Conference October 21, 2017

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History of the Registry – 20 Year Anniversary

 1996 - Legislation passed – Grass roots effort by PD interest groups and researchers. The State voted neutral.  Reason for legislation of registry/Importance of the registry

  • An increasing public health concern as the population is aging
  • Essential for public health professionals and researchers
  • To study the incidence of and possible risk factors concerning Parkinson’s
  • To plan for health care requirements and education of health care providers
  • NE was the first and only fully functional population-based Registry until 2015

 1997 - Data collection began  Suspended October, 2004 – February, 2006 due to lack of funding

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Required Data Elements

 Per Nebraska Statute 81-6,102  From Physicians within 60 days of initial diagnosis:  (a) Name;  (b) Social Security number;  (c) Date of birth;  (d) Gender;  (e) Address at time of diagnosis;  (f) Current address;  (g) Date of diagnosis;  (h) Physician;  (i) Identification of reporting source; and  (j) Any additional information the department demonstrates is reasonable to implement the Parkinson's Disease Registry Act. Per Nebraska Statute 81-6, 103 From Pharmacies for whom they dispense one or more drugs from the State’s ‘Reportable List of Drugs’:  Name  Address  Social Security number  Name and address of the prescribing physician  2017 Reportable List of Drugs (brand name or generic):  Azilect  Carbidopa/levodopa  Mirapex  Neupro  Requip  Selegiline  Stalevo

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Data Flow Chart

Physician verification/ initial reporting Pharmacists patients

Nebraska Parkinson’s Disease Registry

Patient self- reporting Hospital Discharge Data State death file

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Patients per County Map Pre-1997 - 2016

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Nebraska Parkinson's Disease Registry Diagnosis Year Report Pre-1997 - 2016 (Confirmed by Diagnostician)

YEAR TOTAL Pre-1997* 3,359 1997 746 Non-NE Residents 574 1998 761 TOTAL PATIENTS 15,627 1999 569 2000 518 2001 593 2002 524 2003 525 2004** 399 2005** 416 2006 606 2007 675 2008 795 2009 525 2010 596 2011 497 2012 616 2013 625 2014 651 2015 541 2016 516 TOTAL NE RESIDENTS 15,053

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Nebraska Parkinson’s Disease Registry Diagnosis Year 1997-2016

746 761 569 518 524 525 399 416 606 675 795 525 596 497 616 625 651 541 516 593

100 200 300 400 500 600 700 800

1997 1998 1999 2000 2001 2002 2003 2004* 2005* 2006* 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016

Year Diagnosed with Parkinson's Disease Number of Patients

Diagnosis of PD based on physician office confirmation or death certificate Data collection is on-going, therefore yearly totals are not final. *Decrease in cases reported due to registry downtime caused by lack of program funding.

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Studies Using the Data

  • Association between Parkinson’s Disease and Traumatic Brain Injuries – December 2017
  • Parkinson’s Disease Patient Comorbidities Compared to All Patients in Hospital Setting – Jan 2017
  • Patients and Cancer Risk Registry – Dec 2016
  • Parkinson’s Disease and Pesticides Exposure – Journal of Rural Health 2016
  • Parkinson’s Disease Patients and Hospital Discharge Data – 2015
  • Analysis by Max Theis, Epidemiology Intern – 2007
  • Parkinson's Prevalence Estimated by a State Registry – Movement Disorder Journal 2004
  • Studies of Environmental Risk in Parkinson's Disease by John Bertoni MD and Daniel Strickland PhD – 2003
  • Other Studies
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Challenges and Future Plans

 Challenges  Obtaining critical patient information such as date of birth, SSN  – improve linkage and verification  Promote the Parkinson’s registry  – encourage physician reporting  Limited resources – personnel & financial Future Plans  Web-based automated reporting, matching, verification  Update statute to include more patient information  More detailed reports/findings  Public awareness  Continue to explore funding opportunities

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Resources and Contact Information

http://www.dhhs.ne.gov/ced/parkinsons

Basic information about Parkinson’s disease History of the registry Statute and Rules and Regulations Reporting forms and file formats Parkinson’s data reports

Jill.Krause@nebraska.gov