caa a22 4500 605544492 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-014-9790-8 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9790-8 Congenital Hypothyroidism Long-Term Follow-up Project: Navigating the Rough Waters of a Multi-Center, Multi-State Public Health Project [Elektronische Daten] [Kupper Wintergerst, Gina Gembel, Tracey Kreipe, Patrick Zeller, Erica Eugster, Bill Young, Karen Andruszewski, Mary Kleyn, Troi Cunningham, Sandy Fawbush, Nancy Vanderburg, Joe Sockalosky, Ram Menon, Sharon Linard, Gary Hoffman, Lisa Gorman] The Region 4 Midwest Genetics Collaborative, made up of seven regional states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin), brought together pediatric endocrinologists, state laboratory experts, public health follow-up specialists, and parents of children with congenital hypothyroidism (CH) to identify the three-year follow-up management and education patterns of primary care clinicians and pediatric endocrinologists in the care of children diagnosed with CH by state newborn screening (NBS) programs. Among a number of challenges, each state had different NBS methods, data systems, public health laws, and institutional review board (IRB) requirements. Furthermore, the diagnosis of CH was complicated by the timing of the NBS sample, the gestational age, weight, and co-morbidities at delivery. There were 409 children with CH identified through NBS in 2007 in the seven state region. The clinician of record and the parents of these children were invited to participate in a voluntary survey. Approximately 64% of clinician surveys were collected with responses to questions relating to treatment, monitoring practices, educational resources, genetic counseling, and services provided to children with confirmed CH and their families. Nearly one-quarter (24%) of parents surveyed responded to questions relating to treatment, education, genetic counseling, resources, and services they received or would like to receive. De-identified data from six of the seven states were compiled for analysis, with one state being unable to obtain IRB approval within the study timeline. The data from this collaborative effort will improve state follow-up programs and aid in developing three-year follow-up guidelines for children diagnosed with CH. To aid in the facilitation of similar public health studies, this manuscript highlights the challenges faced, and focuses on the pathway to a successful multi-state public health endeavor. National Society of Genetic Counselors, Inc., 2014 Congenital hypothyroidism nationallicence Public health nationallicence Long-term follow-up nationallicence Wintergerst Kupper Department of Pediatrics, Endocrinology, School of Medicine, University of Louisville, Louisville, KY, USA aut Gembel Gina Region 4 Genetics Collaborative, Michigan Public Health Institute, Okemos, MI, USA aut Kreipe Tracey Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Zeller Patrick Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Eugster Erica Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Young Bill Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Andruszewski Karen Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Kleyn Mary Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Cunningham Troi Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Fawbush Sandy Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Vanderburg Nancy Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Sockalosky Joe Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Menon Ram Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Linard Sharon Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Hoffman Gary Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut Gorman Lisa Region 4 Genetics Collaborative, Michigan Public Health Institute, Okemos, MI, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 464-472 1059-7700 24:3<464 2015 24 10897 https://doi.org/10.1007/s10897-014-9790-8 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9790-8 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Wintergerst Kupper Department of Pediatrics, Endocrinology, School of Medicine, University of Louisville, Louisville, KY, USA aut NATIONALLICENCE 700 1- Gembel Gina Region 4 Genetics Collaborative, Michigan Public Health Institute, Okemos, MI, USA aut NATIONALLICENCE 700 1- Kreipe Tracey Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Zeller Patrick Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Eugster Erica Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Young Bill Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Andruszewski Karen Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Kleyn Mary Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Cunningham Troi Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Fawbush Sandy Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Vanderburg Nancy Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Sockalosky Joe Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Menon Ram Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Linard Sharon Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Hoffman Gary Endocrine Workgroup, Region 4 Genetics Collaborative, Okemos, MI, USA aut NATIONALLICENCE 700 1- Gorman Lisa Region 4 Genetics Collaborative, Michigan Public Health Institute, Okemos, MI, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 464-472 1059-7700 24:3<464 2015 24 10897