Multi-state Collaborative Projects


The National Birth Defects Prevention Network helps facilitate collaborative projects that utilize data from state birth defects registries. Guidance and template documents to assist with initiating and facilitating new Multi-State Collaborative Projects can be found below:
  1. Project Guide (Pending update)
  2. Data Call Template (blank): PDF preview | Word doc (Updated 9/14/22)
  3. Data Call Template (with examples): PDF preview | Word doc (Updated 9/14/22)
  4. Questionnaire for Data Submissions: PDF preview | Word doc (Updated 9/14/22)
Abstracts of publications from the Network’s numerous collaborative projects are available below. Inquiries about or interest in participating in collaborative projects should be directed to the NBDPN Surveillance Data Committee.

Scientific impact of the National Birth Defects Prevention Network multistate collaborative publications.
Bascom JT, Stephens SB, Lupo PJ, Canfield MA, Kirby RS, Nestoridi E, Salemi JL, Mai CT, Nembhard WN, Forestieri NE, Romitti PA, St Louis AM, Agopian AJ.Birth Defects Res. 2023 Jul 26. Online ahead of print.PMID: 37492989 Review.

Prevalence and descriptive epidemiology of Turner syndrome in the United States, 2000-2017: A report from the National Birth Defects Prevention Network.
Martin-Giacalone BA, Lin AE, Rasmussen SA, Kirby RS, Nestoridi E, Liberman RF, Agopian AJ, Carey JC, Cragan JD, Forestieri N, Leedom V, Boyce A, Nembhard WN, Piccardi M, Sandidge T, Shan X, Shumate CJ, Stallings EB, Stevenson R, Lupo PJ.Am J Med Genet A. 2023 May;191(5):1339-1349.

Co-occurrence of congenital anomalies by maternal race/ethnicity among infants and fetuses with Down syndrome, 2013-2017: A U.S. population-based analysis. Stallings EB, Isenburg JL, Heinke D, Sherman SL, Kirby RS, Lupo PJ, National Birth Defects Prevention N. 2022b. Birth Defects Res 114(2):57-61.

Prevalence of critical congenital heart defects and selected co-occurring congenital anomalies, 2014-2018: A U.S. population-based study. Stallings EB, Isenburg JL, Aggarwal D, Lupo PJ, Oster ME, Shephard H, Liberman RF, Kirby RS, Nestoridi E, Hansen B, Shan X, Navarro Sanchez ML, Boyce A, Heinke D, National Birth Defects Prevention N. 2022. Birth Defects Res 114(2):45-56.

Changes in Spina Bifida Lesion Level after Folic Acid Fortification in the US. Mai CT, Evans J, Alverson CJ, Yue X, Flood T, Arnold K, Nestoridi E, Denson L, Adisa O, Moore CA, Nance A, Zielke K, Rice S, Shan X, Dean JH, Ethen M, Hansen B, Isenburg J, Kirby RS. The Journal of Pediatrics. 2022 June 27. PMID: 35772508.

Interpregnancy interval and prevalence of selected birth defects: A multistate study. Liberman, R. F., Heinke, D., Petersen, J. M., Parker, S. E., Nestoridi, E., Van Zutphen, A. R., Nembhard, W. N., Ramirez, G. M., Ethen, M. K., Tran, T., Kirby, R. S., Getz, K. D., Nance, A. E., Yazdy, M. M. Birth Defects Research. 2021 Oct 21.

Prevalence of structural birth defects among infants with Down syndrome, 2013-2017: A US population-based study. Heinke et al, 2021 Heinke D, Isenburg JL, Stallings EB, et al. Birth Defects Res. 2021;113(2):189-202.

National population-based estimates for major birth defects, 2010-2014. Mai CT, Isenburg JL, Canfield MA, Meyer RE, Correa A, Alverson CJ, Lupo PJ, Riehle-Colarusso T, Cho SJ, Aggarwal D, Kirby RS, National Birth Defects Prevention N. 2019. Birth Defects Res 111(18):1420-1435.

Population-based birth defects data in the United States, 2012-2016: A focus on abdominal wall defects. Stallings EB, Isenburg JL, Short TD, Heinke D, Kirby RS, Romitti PA, Canfield MA, O'Leary LA, Liberman RF, Forestieri NE, Nembhard WN, Sandidge T, Nestoridi E, Salemi JL, Nance AE, Duckett K, Ramirez GM, Shan X, Shi J, Lupo PJ. 2019. Birth Defects Res 111(18):1436-1447.

Prevalence and descriptive epidemiology of infantile hypertrophic pyloric stenosis in the United States: A multistate, population-based retrospective study, 1999-2010. Kapoor R, Kancherla V, Cao Y, Oleson J, Suhl J, Canfield MA, Druschel CM, Kirby RS, Meyer RE, Romitti PA. 2019. Birth Defects Res 111(3):159-169.
 
Prevalence of selected birth defects by maternal nativity status, United States, 1999–2007. Kirby RS, Mai CT, Wingate MS, Janevic T, Copeland GE, Flood TJ, Isenburg J, Canfield MA, National Birth Defects Prevention Network. Prevalence of selected birth defects by maternal nativity status, United States, 1999–2007. Birth defects research. 2019 Mar 28.

Population based birth defects data in the United States, 2011–2015: A focus on eye and ear defects. Stallings EB, Isenburg JL, Mai CT, Liberman RF, Moore CA, Canfield MA, Salemi JL, Kirby RS, Short TD, Nembhard WN, Forestieri NE. Birth defects research. 2018 Nov 15;110(19):1478-86.

Birth Defect Survival for Hispanic Subgroups. Lopez KN, Nembhard WN, Wang Y, Liu G, Kucik JE, Copeland G, Gilboa SM, Kirby RS, Canfield M. Birth Defect Survival for Hispanic Subgroup. Birth Defects Research. 2018 Mar 1;110(4):352-363

Study of selected birth defects among American Indian/Alaska Native population: A multi-state population-based retrospective study, 1999-2007. Marengo LK, Flood TJ, Ethen MK, Kirby RS, Fisher S, Copeland G, Meyer RE, Dunn J, Canfield MA, Anderson T, Yazzie D, Mai CT, National Birth Defects Prevention N. 2018. Birth Defects Res 110(19):1412-1418.

Status of population-based birth defects surveillance programs before and after the Zika public health response in the United States. Anderka et al, 2018 Anderka M, Mai CT, M Judson E, et al. Birth Defects Res. 2018;110(19):1388-1394.

Population based birth defects data in the United States, 2010–2014: A focus on gastrointestinal defects. Lupo PJ, Isenburg JL, Salemi JL, Mai CT, Liberman RF, Canfield MA, Copeland G, Haight S, Harpavat S, Hoyt AT, Moore CA. Birth Defects Research. 2017 Nov 1;109(18):1504-14.

Prevalence trends of selected major birth defects: A multi-state population-based retrospective study, United States, 1999 to 2007. St Louis AM, Kim K, Browne ML, Liu G, Liberman RF, Nembhard WN, Canfield MA, Copeland G, Fornoff J, Kirby RS. Birth Defects Research. 2017 Nov 1;109(18):1442-50.

Maternal exposure to ozone and PM2. 5 and the prevalence of orofacial clefts in four US states. Zhou Y, Gilboa SM, Herdt ML, Lupo PJ, Flanders WD, Liu Y, Shin M, Canfield MA, Kirby RS. Environmental research. 2017 Feb 1;153:35-40.
 
Using state and provincial surveillance programs to reduce risk of recurrence of neural tube defects in the United States and Canada: a missed opportunity? Flood TJ, Rienks CM, Flores AL, Mai CT, Frohnert BK, Rutkowski RE, Evans JA, Kirby RS. Birth Defects Research Part A: Clinical and Molecular Teratology. 2016 Nov 1;106(11):875-80.
 
Survival of children with trisomy 13 and trisomy 18: A multi-state population-based study.  Meyer RE, Liu G, Gilboa SM, Ethen MK, Aylsworth AS, Powell CM, Flood TJ, Mai CT, Wang Y, Canfield MA. American Journal of Medical Genetics Part A. 2016 Apr 1;170(4):825-37. 

Increasing prevalence of gastroschisis — 14 states, 1995–2012. Jones AM, Isenburg JI, Salemi JL, Arnold KE, Mai CT, aggarwal A, Arias W, Carrino GE, Ferrell E, Folorunso O, Ibe B, Kirby RS, Krapfl HR, Marengo LK, Mosley BS, Nance AE, Romitti PA, Spadafino J, Stock J, Honein MA.  MMWR. Morbidity and Mortality Weekly Report. 2016;65.

Public Health Practice of Population-Based Birth Defects Surveillance Programs in the United States. Mai et al, 2016 Mai CT, Kirby RS, Correa A, Rosenberg D, Petros M, Fagen MC. J Public Health Manag Pract. 2016;22(3):E1-E8.

Population-based microcephaly surveillance in the United States, 2009 to 2013: An analysis of potential sources of variation. Cragan et al, 2016 Cragan JD, Isenburg JL, Parker SE, et al. Birth Defects Res A Clin Mol Teratol. 2016;106(11):972-982.

Population-based birth defects data in the United States, 2008 to 2012: Presentation of state-specific data and descriptive brief on variability of prevalence. Mai et al, 2015 Mai CT, Isenburg J, Langlois PH, et al. Birth Defects Res A Clin Mol Teratol. 2015;103(11):972-993.

Prevalence, Correlates, and Outcomes of Omphalocele in the United States, 1995 - 2005. Marshall J; Salemi JL, Tanner JP; Ramakrishnan R, Feldkamp ML, Marengo L, Meyer RE, Druschel CM, Rickard R, Kirby RS, for the National Birth Defects Prevention Network.Obstetrics & Gynecology 2015; 126(2):284-293. (State Data Committee)

Development and implementation of the first national data quality standards for population-based birth defects surveillance programs in the United States. Anderka et al, 2015 Anderka M, Mai CT, Romitti PA, et al. BMC Public Health. 2015;15:925. Published 2015 Sep 19.

Racial/Ethnic Differences in Survival of United States Children with Birth Defects: A Population-Based Study. Wang Y, Liu G, Canfield M, Mai CT, Gilboa SM, Meyer RE, Anderka M, Copeland GE, Kucik JE, Nembhard WN, Kirby RS, on behalf of the National Birth Defects Prevention Network.  Journal of Pediatrics; 2015 Apr;166(4):819-26.

Updated estimates of neural tube defects prevented by mandatory folic acid fortification - United States, 1995-2011. Williams J, Mai CT, Mulinare J, Isenburg J, Flood TJ, Ethen M, Frohnert B, Kirby RS. MMWR Morb Mortal Wkly Rep. 2015 Jan 16;64(1):1-5.

Birth defects data from population-based birth defects surveillance programs in the United States, 2007 to 2011: highlighting orofacial clefts. Mai CT, Cassell CH, Meyer RE, Isenburg J, Canfield MA, Rickard R, Olney RS, Stallings EB, Beck M, Hashmi SS, Cho SJ, Kirby RS; National Birth Defects Prevention Network. Birth Defects Res A Clin Mol Teratol 2014;100(11):895-904.

The association between race/ethnicity and major birth defects in the United States, 1999-2007. Canfield MA, Mai CT, Wang Y, O'Halloran A, Marengo LK, Olney RS, Borger CL, Rutkowski R, Fornoff J, Irwin N, Copeland G, Flood TJ, Meyer RE, Rickard R, Alverson CJ, Sweatlock J, Kirby RS; National Birth Defects Prevention Network.  Am J Public Health 2014;104(9):e14-23.

Selected birth defects data from population-based birth defects surveillance programs in the United States, 2006 to 2010: Featuring trisomy conditions. Mai CT, Kucik JE, Isenburg J, Feldkamp ML, Marengo LK, Bugenske EM, Thorpe PG, Jackson JM, Correa A, Rickard R, Alverson CJ, Kirby RS; National Birth Defects Prevention Network. Birth Defects Res A Clin Mol Teratol. 2013 Nov;97(11):709-25. (State Data Committee)

Prevalence and Correlates of Gastroschisis in 15 States, 1995 to 2005. Kirby RS; Marshall J; Tanner JP; Salemi JL, Feldkamp ML, Marengo L, Meyer RE, Druschel CM, Rickard R, Kucik JE, for the National Birth Defects Prevention Network.Obstetrics & Gynecology 2013; 122(2, PART 1):275-281. (State Data Committee)

Selected birth defects data from population-based birth defects surveillance programs in the United States, 2005–2009: Featuring critical congenital heart defects targeted for pulse oximetry screening. Mai CT, Riehle-Colarusso T, O'Halloran A, Cragan JD, Olney RS, Lin A, Feldkamp M, Botto LD, Rickard R, Anderka M, Ethen M, Stanton C, Ehrhardt J, Canfield M and the National Birth Defects Prevention Network. Birth Defects Res A Clin Mol Teratol 2012; 94: 970–983. State Data Committee)

Prevalence at Birth of Cleft Lip With or Without Cleft Palate: Data From the International Perinatal Database of Typical Oral Clefts. Clefts. IPDTOC Working Group. Cleft Palate-Craniofacial Journal 2011; 48:66-81.  (State Data Committee)

Updated national birth prevalence estimates for selected birth defects in the United States, 2004 - 2006. Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS, Correa A; National Birth Defects Prevention Network. Birth Defects Res A Clin Mol Teratol 88:1008-1016.  (State Data Committee)

Geocoding capacity of birth defects surveillance programs: results from the National Birth Defects Prevention Network Geocoding Survey. Wang Y, O’Leary L, Rickard RS, Mason CA; National Birth Defects Prevention Network. Journal of Registry Management 2010; 37:22-26 (State Data Committee)

Public health projects for preventing the recurrence of neural tube defects in the United States. Collins JS, Canfield MA, Pearson K, Kirby RS, Case AP, Mai CT, Major J, Mulinare J; National Birth Defects Prevention Network.  June 2009; Accepted 18 June 2009.  Birth Defects Res A Clin Mol Teratol 85:935-938 (NTD Surveillance/Folic Acid Education Committee)

Clinical geneticists in birth defects surveillance and epidemiology research programs: past, present and future roles. Lin AE, Rasmussen SA, Scheuerle A, Stevenson RE. Birth Defects Res A Clin Mol Teratol. 2009 Jan;85(1):69-75. PMID: 19107957.

Multistate study of the epidemiology of clubfoot. Parker SE, Mai CT, Strickland MJ, Olney RS, Rickard R, Marengo L, Wang Y, Hashmi SS, Meyer RE; National Birth Defects Prevention Network. Birth Defects Res A Clin Mol Teratol 2009; 85:897-904. (State Data Committee)

The association between major birth defects and preterm birth. Honein MA, Kirby RS, Meyer RE, Xing J, Skerrette NI, Yuskiv N, Marengo L, Petrini JR, Davidoff MJ, Mai CT, Druschel CM, Viner-Brown S, Sever LE; National Birth Defects Prevention Network.   Maternal Child Health J 2009; 13:164-175.  (State Data Committee)

Trends in the postfortification prevalence of spina bifida and anencephaly in the United States. Boulet SL, Yang Q, Mai C, Kirby RS, Collins JS, Robbins JM, Meyer R, Canfield MA, Mulinare J; National Birth Defects Prevention Network.   Birth Defects Res A Clin Mol Teratol 2008; 82:527-532.  (Collaborative project of the State Data and NTD Surveillance/Folic Acid Education Committees)

Collection, use, and protection of population-based birth defects surveillance data in the united states. Mai CT, Law DJ, Mason CA, McDowell BD, Meyer RE, Musa D; National Birth Defects Prevention Network. Birth Defects Res A Clin Mol Teratol. 2007 Dec;79(12):811-4. PMID: 18064713.

Birth defects interstate data exchange: a battle worth fighting? Cassell C, Mai C, Rickard R.  Birth Defects Res A Clin Mol Teratol 2007; 79:806-810.  (State Data Committee)

Clinician reviewers in birth defects surveillance programs: survey of the National Birth Defects Prevention Network. Lin AE, Forrester MB, Cunniff C, Higgins CA, Anderka M. 2006. Birth Defects Res A Clin Mol Teratol 76(11):781-786.

National estimates and race/ethnic-specific variation of selected birth defects in  the United States, 1999-2001. Canfield MA, Honein MA, Yuskiv N, Xing J, Mai CT, Collins JS, Devine O, Petrini J, Ramadhani TA, Hobbs CA, Kirby RS.  Birth Defects Res A Clin Mol Teratol 2006; 76:747-756.  (State Data Committee)

Survival of infants with neural tube defects in the presence of folic acid fortification. Bol KA, Collins JS, Kirby RS; National Birth Defects Prevention Network.   Pediatrics 2006; 117:803-813. (Collaborative project of the State Data and NTD Surveillance/Folic Acid Education Committees)

Improved national prevalence estimates for 18 selected major birth defects - United States, 1999 - 2001. Canfield MA, Ramadhani TA, Yuskiv N, Davidoff MJ, Petrini JR, Hobbs CA, Kirby RS, Romitti PA, Collins JS, Devine O, Honein MA, Mai CT, Edmonds LD, Correa A.  MMWR 2006; 54:1301-1305 (reprinted in JAMA 2006; 295:618-620). (Collaborative project of the State Data and NTD Surveillance/Folic Acid Education Committees)

Changes in the Birth Prevalence of Selected Birth Defects after Grain  Fortification with Folic Acid in the United States: Findings from a Multi-State Population-Based Study.  Canfield MA, Collins JS, Botto LD, Williams LJ, Mai CT, Kirby RS, Pearson K, Devine O, Mulinare J, National Birth Defects Prevention Network.   Birth Defects Res A Clin Mol Teratol 2005; 73:679-689. (Collaborative project of the State Data and NTD Surveillance/Folic Acid Education Committees)

Decline in the Prevalence of Spina Bifida and Anencephaly by Race/Ethnicity:1995 - 2002. Williams LJ, Rasmussen SA, Flores A, Kirby RS, Edmonds LD. Pediatrics 2005; 116:580-586. (Collaborative project of the State Data and NTD Surveillance/Folic Acid Education Committees)

Random error and undercounting in birth defects surveillance data: implications for inference. Correa-Villaseñor A, Satten GA, Rolka H, Langlois P, Devine O. Birth Defects Res A Clin Mol Teratol. 2003; 67: 610–616. PMID: 14703782.

Prevalence of Spina Bifida and Anencephaly During the Transition to Mandatory  Folic Acid Fortification in the United States. Williams LJ, Mai CT, Edmonds LD, Shaw GM, Kirby RS, Hobbs CA, Sever LE, Miller LA, Meaney FJ, Levitt M.  Teratology 2002; 66:33-39.  (Collaborative project for the State Data and NTD Surveillance/Folic Acid Education Committees)