Findings From a Congenital Cytomegalovirus Birth Registry : - - PowerPoint PPT Presentation

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Findings From a Congenital Cytomegalovirus Birth Registry : - - PowerPoint PPT Presentation

May 15, 2023 277 likes •660 views

Findings From a Congenital Cytomegalovirus Birth Registry : Profile for Texas Jerry A. Miller, Ph.D. 1 , 2 , Gail J. Demmler-Harrison, M.D. 1,2 , Jill M. Johnson 2 , and Carol Greisser, R.N 1,2 And the Congenital CMV Registry Group Background

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SLIDE 1

Findings From a Congenital Cytomegalovirus Birth Registry : Profile for Texas

Jerry A. Miller, Ph.D.1,2, Gail J. Demmler-Harrison, M.D.1,2, Jill M. Johnson2, and Carol Greisser, R.N1,2 And the Congenital CMV Registry Group

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SLIDE 2

Background

  • Purpose and formation of Registry
  • Started in 1982
  • National in scope; Focus here on

Texas-born cases

  • One-page registry form
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SLIDE 3

Objectives of Registry

  • Information on birth characteristics of

cCMV infants

  • Possible changes in incidence
  • Racial/ethnic differences
  • Trends over Time
  • Identify targets for prevention
  • To inform future studies
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SLIDE 4

Methods

One-page Case Report Form

  • Keep it simple for reporting sites
  • Capture essential information
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SLIDE 5

One-Page Registry form (paste image of form here)

(explanation of some items on form)

Case Report Form

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SLIDE 6

Methods

  • Administrative Center in Houston
  • Electronic database
  • Statistical analyses
  • Periodic analyses
  • Coordinated with CDC
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SLIDE 7

Findings

  • Cases accrued from 1982 - 2016
  • 1,066 cases nationwide reported
  • 43 states
  • 452 cases in Texas
  • 18 reporting physicians
  • 104 hospitals
  • 42 counties many in Houston
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SLIDE 8

Cases by Year (in Texas)

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SLIDE 9

Findings - DEMOGRAPHICS

Race/Ethnicity N % Mother’s Age Percent Married Insurance Private Medicaid Non-Hispanic White (NHW) 209 46.2 28.3 (5.4) 84.0 119 (64%) 62 (33%) Non-Hispanic Black (NHB) 75 16.6 23.5 (6.9)* 25.4** 14 (22)* 49 (77)* Hispanic White (WH) 99 21.9 22.9 (6.2)* 50.6** 21 (24)* 66 (75)* Other/unknown 69 15.3 24.9 (7.5) 54.2** 19 (37)* 32 (62)* Total 452 100.0 26.0 (6.6) 63.2 179 (39.6) 32 (62) * Different from NHWhites at p < .02 *Different from NHW and NHBlacks at p < .02

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Findings - DEMOGRAPHICS

Race/Ethnicity N % Mother’s Age Percent Married Insurance Private Medicaid Non-Hispanic White (NHW) 209 46.2 28.3 (5.4) 84.0 119 (64%) 62 (33%) Non-Hispanic Black (NHB) 75 16.6 23.5 (6.9)* 25.4** 14 (22)* 49 (77)* Hispanic White (WH) 99 21.9 22.9 (6.2)* 50.6** 21 (24)* 66 (75)* Other/unknown 69 15.3 24.9 (7.5) 54.2** 19 (37)* 32 (62)* Total 452 100.0 26.0 (6.6) 63.2 179 (39.6) 32 (62) * Different from NHWhites at p < .02 *Different from NHW and NHBlacks at p < .02

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SLIDE 11

Mothers’ Age

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Mothers’ Age and Race/Ethnicity

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SLIDE 13

Findings - continued

p < .002 p < .002

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Findings – BIRTH CHARACTERISTICS

Weight, g Mean (SD) Length, cm Mean (SD) Head Circum- ference, cm Mean (SD) Overall 2547 (850) 45.3 (5.6) 30.6 (3.1)

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SLIDE 15

Findings – BIRTH CHARACTERISTICS

Race/ Ethnicity

  • f Mother

Weight, g Mean (SD) Length, cm Mean (SD) Head Circum- ference, cm Mean (SD) Overall 2547 (850) 45.3 (5.6) 30.6 (3.1) NH White 2792 (834) 47.7 (4.6) 34.2 (3.0) NH Black 2233 (821)* 44.3 (5.9)* 29.9 (3.7)* Hispanic White 2431 (801)* 45.7 (4.9)* 31.3 (3.4)* Other/unk 2272 (784)* 45.3 (5.6)* 30.6 (3.1)*

* Different from NHWhites at p < .001

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SLIDE 16

Findings – LOW BIRTHWEIGHT

Race/ Ethnicity

  • f Mother

Weight, g Mean (SD)

Low Birth- weight (<2500g) N (%) NH White

2792 (834)

76 (36.4) NH Black

2233 (821)*

45 (60.0)** Hispanic White

2431 (801)*

50 (50.5)** Other/unk

2272 (784)*

35 (50.7)** Total

2547 (850)

206 (45.6)

* Different from NHWhites at p < .001 or ** p < .05

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Findings – LOW BIRTHWEIGHT

. . . But not pre-term

Race/ Ethnicity

  • f Mother

Weight, g Mean (SD)

Low Birth- weight (<2500g) N (%) Gestational Age Mean (SD) Pre-term (< 32 weeks gestation) N (%) NH White

2792 (834)

76 (36.4) 37.1 (3.7) 22 (10.5) NH Black

2233 (821)*

45 (60.0)** 36.2 (4.0) 10 (13.3) Hispanic White

2431 (801)*

50 (50.5)** 36.5 (4.0) 12 (12.1) Other/unk

2272 (784)*

35 (50.7)** 35.8 (4.0)** 10 (14.5) Total

2547 (850)

206 (45.6) 36.7 (3.9) 54 (11.9)

* Different from NHWhites at p < .02 or ** p < .05

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SLIDE 18

Low Birthweight

Rank Symptom Low BW % with Normal BW % with 1 SGA 60.0 ** 9.5 2 Low Platelets 55.5 ** 22.6 3 Hearing Impairment 50.8 * 33.5 4 Petechiae 46.2 ** 28.6 5 Brain Calcifications 45.6 ** 26.2 6 Bilirubinemia 45.1 * 29.0 7 Enlarged Liver 44.2 ** 20.1 8 Microcephaly 39.5 ** 10.6 9 Enlarged Spleen 39.2 ** 17.2 10 Jaundice 34.4 ** 16.9 11 Neuro Abnormality 30.5 ** 11.3 12 ALT > 100 IU 18.8 19.5 13 Anemia 9.6 7.3 14 Retinitis 9.5 5.0 15 Pneumonia 9.3 * 4.2 16 Seizures 6.1 4.7 Average no. of Symptoms 4.7 ** 2.3 Deaths 36 (17.5%) 4 (1.6%)

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SLIDE 19

Low Birthweight

twice as common

Rank Symptom Low BW % with Normal BW % with 1 SGA 60.0 ** 9.5 2 Low Platelets 55.5 ** 22.6 3 Hearing Impairment 50.8 * 33.5 4 Petechiae 46.2 ** 28.6 5 Brain Calcifications 45.6 ** 26.2 6 Bilirubinemia 45.1 * 29.0 7 Enlarged Liver 44.2 ** 20.1 8 Microcephaly 39.5 ** 10.6 9 Enlarged Spleen 39.2 ** 17.2 10 Jaundice 34.4 ** 16.9 11 Neuro Abnormality 30.5 ** 11.3 12 ALT > 100 IU 18.8 19.5 13 Anemia 9.6 7.3 14 Retinitis 9.5 5.0 15 Pneumonia 9.3 * 4.2 16 Seizures 6.1 4.7 Average no. of Symptoms 4.7 ** 2.3 Deaths 36 (17.5%) 4 (1.6%)

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Findings: SYMPTOMS AT BIRTH

Non-Neurological Neurological Laboratory

SGA 119/376 (31.6) Intracranial Calcification 122/349 (35.0) Low Platelets 123/319 (38.6) Petechiae 138/379 (36.4) Hearing Impairment 123/304 (40.5) Bilirubin- emia 109/297 (36.7) Enlarged Liver 114/372 (30.6) Microcephaly 86/369 (23.3) ↑ ALT 43/225 (19.1) Enlarged Spleen 101/375 (26.9) Retinitis 24/349 (6.9) Co- Infection 17/158 (10.8) Jaundice 91/370 (24.6) Seizures 20/376 (5.3) Antiviral Treatment 67/185 (36.2) Anemia 29/349 (7.3) Pneumonia 24/374 (6.4)

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Findings: SYMPTOMS IN > 25% of Infants

Non-Neurological Neurological Laboratory

SGA 119/376 (31.6) Intracranial Calcification 122/349 (35.0) Low Platelets 123/319 (38.6) Petechiae 138/379 (36.4) Hearing Impairment 123/304 (40.5) Bilirubin- emia 109/297 (36.7) Enlarged Liver 114/372 (30.6) Microcephaly 86/369 (23.3) ↑ ALT 43/225 (19.1) Enlarged Spleen 101/375 (26.9) Retinitis 24/349 (6.9) Co- Infection 17/158 (10.8) Jaundice 91/370 (24.6) Seizures 20/376 (5.3) Antiviral Treatment 67/185 (36.2) Anemia 29/349 (7.3) Neurological Abnormality 70/357 (19.6) Pneumonia 24/374 (6.4)

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SLIDE 22

Findings: > 25% Among Non-Hispanic Whites

Non-Neurological Neurological Laboratory

SGA 20.8 Intracranial Calcification 27.8 Low Platelets 33.8 Petechiae 30.2 Hearing Impairment 41.3 Bilirubin- emia 27.8 Enlarged Liver 25.8 Microcephaly 18.2 ↑ ALT 18.1 Enlarged Spleen 23.9 Retinitis 4.0 Co- Infection 6.3 Jaundice 18.9 Seizures 3.2 Antiviral Treatment 45.9 Anemia 4.7 Neurological Abnormalitity 15.3 Pneumonia 3.7

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SLIDE 23

Findings: > 25% Among Non-Hispanic Blacks

Non-Neurological Neurological Laboratory

SGA 52.5 * Intracranial Calcification 38.0 Low Platelets 26.4 Petechiae 32.8 Hearing Impairment 40.5 Bilirubin- emia 30.8 Enlarged Liver 24.6 Microcephaly 31.6 ↑ ALT 7.7 Enlarged Spleen 24.6 Retinitis 7.4 Co- Infection 8.0 Jaundice 21.1 Seizures 5.1 Antiviral Treatment 26.6 Anemia 11.1 Neurological Abnormalitity 17.2 Pneumonia 8.9

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SLIDE 24

Findings: > 25% Among White Hispanics

Non-Neurological Neurological Laboratory

SGA 40.0 * Intracranial Calcification 40.5 Low Platelets 50.7 * Petechiae 47.3 * Hearing Impairment 38.5 Bilirubin- emia 45.2 * Enlarged Liver 37.3 * Microcephaly 28.4 ↑ ALT 23.5 Enlarged Spleen 30.7 Retinitis 11.6 Co- Infection 7.1 Jaundice 32.4 * Seizures 12.3 Antiviral Treatment 36.7 Anemia 13.9 Neurological Abnormalitity 30.9 * Pneumonia 12.2

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Findings - SYMPTOMS

Average Number of Symptoms by Race/Ethnicity Overall Average 3.4 symptoms

NH White NH Black White Hispanic Unk/ Other Average 2.7 3.3 4.2 * 4.1 S.D. 3.2 3.2 3.5 3.2 Range 0 - 15 0 - 15 0 - 13 0 - 13

Different from NHWhites at p < .01

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Findings - continued

DEATHS: 55 Total (12.1%)

  • Fetal demise
  • Stillborn
  • Post-birth death
  • No racial/ethnic differences apparent
  • Limited follow-up period
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Treatment Trends Over Time

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Conclusions

  • Registry provides a profile of serious cCMV

cases over a 34-year period in Texas

  • White Hispanic infants appear to be more

seriously affected by cCMV

  • Lower weight, length and head circumference
  • More often low birthweight
  • More symptoms at birth
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Conclusions - continued

  • Eight common symptoms affected > 25% of

infants

  • Racial and ethnic differences in demographics

and birth characteristics

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Conclusions - continued

  • Eight common symptoms affected > 25% of

infants

  • Racial and ethnic differences in demographics

and birth characteristics

  • Low birthweight a risk factor for more severe

illness & death

  • 8 to 12 percent experienced death / fetal demise
  • Anti-viral treatment increased over the time

period

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Limitations

  • Mostly serious cases
  • Not true incidence rates
  • Data Quality
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Lessons Learned

Study Methods

  • Participation
  • Data quality
  • Epidemiologic considerations
  • “Bang for the buck”
  • Not a surveillance system
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Acknowledgements

Registry funding provided by:

  • U.S. Centers for Disease Control and

Prevention, Atlanta, GA, USA

  • Baylor College of Medicine CMV

Research Fund

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SLIDE 34

Thank You !

Findings from a Congenital Cytomegalovirus Birth Registry: Profile for Texas

Jerry A. Miller, Ph.D.1,2, Gail J. Demmler-Harrison, M.D.1,2, Jill M. Johnson2, and Carol Greisser, R.N1,2 And the Congenital CMV Registry Group

1Departments of Pediatrics and Infectious Disease, Baylor College of Medicine;

and 2Texas Childrenʼs Hospital, Houston, Texas, USA

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Future Directions for a Registry

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Future Directions for a Registry

  • Align with Health Policies