Sickle Cell Disease Activities October 2020 January 2021 February 10 2021 Publications httpswwwcdcgovncbdddsicklecellarticleshtml This article focuses on healthcare providers knowledge of SCDand the potential opportunities for nursing professionals to help those with SCD ID: 1045310
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1. February 10, 2021Sickle Cell Data Collection Program
2. Sickle Cell Disease ActivitiesOctober 2020 – January 2021February 10, 2021
3. Publicationshttps://www.cdc.gov/ncbddd/sicklecell/articles.html
4. “This article focuses on healthcare providers’ knowledge of SCD—and the potential opportunities for nursing professionals to help those with SCD live healthier and longer lives.”https://www.nbna.org//Files/NBNA%20Newsletters/cs_NBNA_SUMMER_2020%2010.28.pdfArticles
5. Videoshttps://vimeo.com/showcase/7664222
6. Data Briefshttps://ghpc.gsu.edu/download/sickle-cell-data-collection-program-brief-older-adults-living-with-sickle-cell-disease/
7. Mapshttps://ghpc.gsu.edu/sickle-cell-data-collection-maps/
8. Capacity Building Resourceshttps://www.cdc.gov/ncbddd/hemoglobinopathies/building-surveillance-capacity.html
9. The federal FY21 appropriations bill was recently passed including $2M for the SCDC program, which will be applied to year 2 of the cooperative agreement. https://docs.house.gov/billsthisweek/20201221/BILLS-116RCP68-JES-DIVISION-H.pdfFY 2021 Appropriations
10. https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc-newsletter.htmlThe Bloodline Newsletter
11. Thank you!ibx5@cdc.gov404-498-6724
12. Updates from the SCDC ProgramThe Epidemiology of SCD in California, 2004-2018
13. BackgroundSusan Paulukonis, PI for California Sickle Cell Data Collection Program
14. CA Sickle Cell Data Collection ProgramSince 2010 (RuSH and PHRESH programs preceding)FundingCDC Foundation, 2015-2019CDC, Capacity Building grant 2019-2020CDC, SCDC grant, 2020-2023Additional funding from State of CaliforniaAimImprove healthcare and health outcomes for those with SCD by conducting public health surveillance in sickle cell disease at state levelDescribe the affected population, health outcomes, mortality, treatments, access to care, geography, and health disparities of all Californians with SCDNot a registry – passive data collection and linkage
15. MethodsLink administrative and other diverse data sources at person level, over timeNewborn screening casesHospital inpatient encountersEmergency department encountersAmbulatory surgery encountersMedicaid claims and eligibility dataClinical case reportsVital records death data for mortality statistics15
16. Why Do the Data and Numbers Change?Increased resources allow for:More data sourcesAmbulatory surgeryAdditional clinical sites reportingMore (and more competent) staffMore expertise on data linkageBetter programmersMore collaborative programming and shared knowledgeMore time for quality controlWe’re getting better at this and we have more data16
17. Will the Data and Numbers Change Again?Upcoming improvementsMedicare data (for dual eligible enrollees and those with Medicare only)CHHS Record Reconciliation and Research Data HubAll payer databaseMore clinical site partnersMore years of data17
18. Updated California scdc dataJhaqueline Valle, Research ScientistSophia Horiuchi, Data Analyst
19. Updating CA SCDC Data: 2016-2018Age GroupPrior Administrative Data*Current Administrative Data*Current Admin, Clinical, and NBS Data0-9 years in 20186047841,21010-19 years92010811,61120-29 years1,26214161,74930-39 years1,16813331,73540-49 years7588711,10250-59 years67074490660-69 years33039547370-79 years13715517080 or older505863Total5,89968379,019*Cases meeting conservative case definition, found in administrative data sources.
20. Full Cohort 2004-2018
21. Full Cohort 2004-2018Total # of identified SCD cases : 9,878Total # of Confirmed cases: 3,547Total # of Probable Cases: 6,33121N=9,878
22. Number of cases found in our data over time 2004-201822Mean time spent in our cohort PY=8.43 yearsMedian time spent in our cohortPY=9.99 *Pediatric = under 21yrs
23. Full Cohort 2004-2018: Data Source ContributionsData SourceNumber of people found in each% of cohortClinical2,74028%NBS1,62416%MC6,35664%ED7,61877%PDD6,93070%AS2,78128%23Medi-Cal and other administrative datasets are substantial contributors. 60-70% of the cohort are seen in at least one of the administrative datasets.
24. Snapshot: 2016-2018 Cohort
25. Current 2016-2018 Cohort of Californians with SCD* 25Cohort 2016-2018 N% Total9,019100%Born in 2016-20183043%Died in 2016-20183424%
26. Current 2016-2018 Cohort of Californians with SCD*26*All others <11County* Pediatric (under 21)Adult (21+)Los Angeles1,1441,952San Bernardino310424Alameda224408San Diego212329Sacramento203318Riverside184324Contra Costa154255Orange96148San Joaquin107122Solano82127Kern86111Fresno80109San Francisco41137Santa Clara4886Stanislaus2336Ventura2433San Mateo-41Merced-29Sonoma-19Monterey-20Tulare-19Yolo-13Santa Barbara-16San Luis Obispo-13Shasta-15Kings-12Placer-13
27. Current 2016-2018 Cohort of Californians with SCD* 27Sex0-9 years 10-19 years20-29 years30-39 years40-49 years50-59 years60-69 years70-79 years80 or olderTotalFemale46%50%54%58%63%64%65%69%68%56%Male54%50%46%42%37%36%35%31%32%44%
28. Current 2016-2018 Cohort of Californians with SCD*28* In our data at any point during 2016-2018.Age GroupTotalIn Medi-CalNot in Medi-Cal NnRow %nRow %Pediatric (under 21)2,9511,71758%1,23442%Adult (21+)6,0683,68861%2,38039%Total9,0195,40560%3,61440%
29. Webinar Q&A
30. How to Find CA SCDC@SickleCellResources@SickleCellCalifTrackingCalifornia.orgCASickleCell.org
31. Wrap UpThank you all for your attendance& participation.