The Unique Experience of a New Multidisciplinary Program for 22q Deletion and Duplication Syndromes in a Community Hospital in Florida: A Reaffirmation That Multidisciplinary Care Is Essential for Best Outcomes in These Patients
In 2018, the first 22q11.2 multidisciplinary program in the state of Florida was created at Joe DiMaggio Children’s Hospital following the new paradigm for best care of 22q11.2 deletion patients. Since inauguration, the clinic flourished despite challenges. Our 22q clinic has 149 patients ranging fr...
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Veröffentlicht in: | Genes 2022-10, Vol.13 (11), p.1949 |
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description | In 2018, the first 22q11.2 multidisciplinary program in the state of Florida was created at Joe DiMaggio Children’s Hospital following the new paradigm for best care of 22q11.2 deletion patients. Since inauguration, the clinic flourished despite challenges. Our 22q clinic has 149 patients ranging from ages 0–21. From that total, 138 are 22q11.2DS: 74 females and 64 males (44% Hispanics, 35% Caucasians, 11% African American, 3% Asian and 7% multiracial). Eleven patients are in the 22q11.2 duplication group; 7 females and 4 males (50% Hispanics, 30% Caucasians 10% Asian and 10% multiracial). Our multidisciplinary team has grown to include twelve different specialties to better serve our growing patient population and has adapted to the pandemic by offering virtual clinics. Although there are many 22q multidisciplinary clinics worldwide, our clinic has special characteristics. We have an ethnically diverse group of patients and a large team of mostly bilingual providers who are passionate about and have expertise on 22q Deletion/Duplication Syndromes. Our 22q clinic is based at a community hospital and counts on the partnership of local 22q patient support groups. The program is also unique in that it is now expanding to care for adult 22q patients. Our clinic is another live example of how multidisciplinary care is the best way to achieve the most optimal outcomes in 22q patients, and that if there is a passionate and dedicated team of providers willing to collaborate for these patients, a 22q multidisciplinary program can thrive, succeed and grow at a community hospital. |
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Since inauguration, the clinic flourished despite challenges. Our 22q clinic has 149 patients ranging from ages 0–21. From that total, 138 are 22q11.2DS: 74 females and 64 males (44% Hispanics, 35% Caucasians, 11% African American, 3% Asian and 7% multiracial). Eleven patients are in the 22q11.2 duplication group; 7 females and 4 males (50% Hispanics, 30% Caucasians 10% Asian and 10% multiracial). Our multidisciplinary team has grown to include twelve different specialties to better serve our growing patient population and has adapted to the pandemic by offering virtual clinics. Although there are many 22q multidisciplinary clinics worldwide, our clinic has special characteristics. We have an ethnically diverse group of patients and a large team of mostly bilingual providers who are passionate about and have expertise on 22q Deletion/Duplication Syndromes. Our 22q clinic is based at a community hospital and counts on the partnership of local 22q patient support groups. The program is also unique in that it is now expanding to care for adult 22q patients. Our clinic is another live example of how multidisciplinary care is the best way to achieve the most optimal outcomes in 22q patients, and that if there is a passionate and dedicated team of providers willing to collaborate for these patients, a 22q multidisciplinary program can thrive, succeed and grow at a community hospital.</description><identifier>ISSN: 2073-4425</identifier><identifier>EISSN: 2073-4425</identifier><identifier>DOI: 10.3390/genes13111949</identifier><identifier>PMID: 36360185</identifier><language>eng</language><publisher>Basel: MDPI AG</publisher><subject>Cardiology ; Cardiovascular disease ; Care and treatment ; Caregivers ; Congenital diseases ; Coronaviruses ; COVID-19 ; DiGeorge syndrome ; DiMaggio, Joe ; Down syndrome ; Endocrinology ; Evaluation ; Gene deletion ; Genetic counseling ; Genetics ; Health services administration ; Hispanic Americans ; Hospitals ; Immunology ; Interdisciplinary aspects ; Multidisciplinary teams ; Opinion ; Pathology ; Patients ; Pediatrics ; Social work ; Speech therapy ; White people</subject><ispartof>Genes, 2022-10, Vol.13 (11), p.1949</ispartof><rights>COPYRIGHT 2022 MDPI AG</rights><rights>2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). 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Since inauguration, the clinic flourished despite challenges. Our 22q clinic has 149 patients ranging from ages 0–21. From that total, 138 are 22q11.2DS: 74 females and 64 males (44% Hispanics, 35% Caucasians, 11% African American, 3% Asian and 7% multiracial). Eleven patients are in the 22q11.2 duplication group; 7 females and 4 males (50% Hispanics, 30% Caucasians 10% Asian and 10% multiracial). Our multidisciplinary team has grown to include twelve different specialties to better serve our growing patient population and has adapted to the pandemic by offering virtual clinics. Although there are many 22q multidisciplinary clinics worldwide, our clinic has special characteristics. We have an ethnically diverse group of patients and a large team of mostly bilingual providers who are passionate about and have expertise on 22q Deletion/Duplication Syndromes. Our 22q clinic is based at a community hospital and counts on the partnership of local 22q patient support groups. The program is also unique in that it is now expanding to care for adult 22q patients. Our clinic is another live example of how multidisciplinary care is the best way to achieve the most optimal outcomes in 22q patients, and that if there is a passionate and dedicated team of providers willing to collaborate for these patients, a 22q multidisciplinary program can thrive, succeed and grow at a community hospital.</description><subject>Cardiology</subject><subject>Cardiovascular disease</subject><subject>Care and treatment</subject><subject>Caregivers</subject><subject>Congenital diseases</subject><subject>Coronaviruses</subject><subject>COVID-19</subject><subject>DiGeorge syndrome</subject><subject>DiMaggio, Joe</subject><subject>Down syndrome</subject><subject>Endocrinology</subject><subject>Evaluation</subject><subject>Gene deletion</subject><subject>Genetic counseling</subject><subject>Genetics</subject><subject>Health services administration</subject><subject>Hispanic Americans</subject><subject>Hospitals</subject><subject>Immunology</subject><subject>Interdisciplinary aspects</subject><subject>Multidisciplinary teams</subject><subject>Opinion</subject><subject>Pathology</subject><subject>Patients</subject><subject>Pediatrics</subject><subject>Social work</subject><subject>Speech therapy</subject><subject>White people</subject><issn>2073-4425</issn><issn>2073-4425</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNptkktv1DAQxyMEolXpkbslLly2-JkHB6Rlu31IhVawnC3Hnuy6SuzUTgr7ffkgddjyWFT7YHv8m__M2JNlrwk-YazC79bgIBJGCKl49Sw7pLhgM86peP7P_iA7jvEWp8ExxVi8zA5YznJMSnGY_VxtAH1z9m4EtPzRQ7DgNCDfIIU-w3f0aWwHa2zUtm-tU2GLboJfB9WhxgdE6R06hRYG6x1SzqDTMWFa_Tp_3ToTfAcR2XSJFr7rRmeHLbrwsbeDaif7WeuDNeo9mqMvoJrGhm7nvdqo4YnoCxUAXUa0jBHcYJPIlMdHiAO6Hgf9O1yqKgK6SVKJiq-yF41qIxw_rkfZ6my5WlzMrq7PLxfzq5lmZTXMSMEKUFgbVaS3qaqaYZFzoQwhnAsMRmOdM6ihrEvNTdVUQom6pobSkhLDjrIPO9l-rLtEp9BBtbIPtkupS6-s3L9xdiPX_l5WeYV5IZLA20eB4NOHxEF2qXZoW-XAj1HSgomyEJTyhL75D731Y3CpuoniOeW5oH-ptWpBWtf4FFdPonJecFFQxkWeqJMnqDQNdFZ7B41N9j2H2c5BBx9jgOZPjQTLqTHlXmOyB5PM2D0</recordid><startdate>20221026</startdate><enddate>20221026</enddate><creator>Meneses, Zaimary</creator><creator>Durant, Jenna</creator><creator>Ale, Hanadys</creator><general>MDPI AG</general><general>MDPI</general><scope>AAYXX</scope><scope>CITATION</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>COVID</scope><scope>DWQXO</scope><scope>FR3</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>LK8</scope><scope>M7P</scope><scope>P64</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-7278-3142</orcidid></search><sort><creationdate>20221026</creationdate><title>The Unique Experience of a New Multidisciplinary Program for 22q Deletion and Duplication Syndromes in a Community Hospital in Florida: A Reaffirmation That Multidisciplinary Care Is Essential for Best Outcomes in These Patients</title><author>Meneses, Zaimary ; Durant, Jenna ; Ale, Hanadys</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c389t-1737ea0cda718599b305645ad114450edc0c63ebe8b8c4d9f95a5bb2d22821d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Cardiology</topic><topic>Cardiovascular disease</topic><topic>Care and treatment</topic><topic>Caregivers</topic><topic>Congenital diseases</topic><topic>Coronaviruses</topic><topic>COVID-19</topic><topic>DiGeorge syndrome</topic><topic>DiMaggio, Joe</topic><topic>Down syndrome</topic><topic>Endocrinology</topic><topic>Evaluation</topic><topic>Gene deletion</topic><topic>Genetic counseling</topic><topic>Genetics</topic><topic>Health services administration</topic><topic>Hispanic Americans</topic><topic>Hospitals</topic><topic>Immunology</topic><topic>Interdisciplinary aspects</topic><topic>Multidisciplinary teams</topic><topic>Opinion</topic><topic>Pathology</topic><topic>Patients</topic><topic>Pediatrics</topic><topic>Social work</topic><topic>Speech therapy</topic><topic>White people</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Meneses, Zaimary</creatorcontrib><creatorcontrib>Durant, Jenna</creatorcontrib><creatorcontrib>Ale, Hanadys</creatorcontrib><collection>CrossRef</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>Coronavirus Research Database</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Biological Science Collection</collection><collection>Biological Science Database</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Access via ProQuest (Open Access)</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Genes</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Meneses, Zaimary</au><au>Durant, Jenna</au><au>Ale, Hanadys</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The Unique Experience of a New Multidisciplinary Program for 22q Deletion and Duplication Syndromes in a Community Hospital in Florida: A Reaffirmation That Multidisciplinary Care Is Essential for Best Outcomes in These Patients</atitle><jtitle>Genes</jtitle><date>2022-10-26</date><risdate>2022</risdate><volume>13</volume><issue>11</issue><spage>1949</spage><pages>1949-</pages><issn>2073-4425</issn><eissn>2073-4425</eissn><abstract>In 2018, the first 22q11.2 multidisciplinary program in the state of Florida was created at Joe DiMaggio Children’s Hospital following the new paradigm for best care of 22q11.2 deletion patients. Since inauguration, the clinic flourished despite challenges. Our 22q clinic has 149 patients ranging from ages 0–21. From that total, 138 are 22q11.2DS: 74 females and 64 males (44% Hispanics, 35% Caucasians, 11% African American, 3% Asian and 7% multiracial). Eleven patients are in the 22q11.2 duplication group; 7 females and 4 males (50% Hispanics, 30% Caucasians 10% Asian and 10% multiracial). Our multidisciplinary team has grown to include twelve different specialties to better serve our growing patient population and has adapted to the pandemic by offering virtual clinics. Although there are many 22q multidisciplinary clinics worldwide, our clinic has special characteristics. We have an ethnically diverse group of patients and a large team of mostly bilingual providers who are passionate about and have expertise on 22q Deletion/Duplication Syndromes. Our 22q clinic is based at a community hospital and counts on the partnership of local 22q patient support groups. The program is also unique in that it is now expanding to care for adult 22q patients. Our clinic is another live example of how multidisciplinary care is the best way to achieve the most optimal outcomes in 22q patients, and that if there is a passionate and dedicated team of providers willing to collaborate for these patients, a 22q multidisciplinary program can thrive, succeed and grow at a community hospital.</abstract><cop>Basel</cop><pub>MDPI AG</pub><pmid>36360185</pmid><doi>10.3390/genes13111949</doi><orcidid>https://orcid.org/0000-0002-7278-3142</orcidid><oa>free_for_read</oa></addata></record> |
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subjects | Cardiology Cardiovascular disease Care and treatment Caregivers Congenital diseases Coronaviruses COVID-19 DiGeorge syndrome DiMaggio, Joe Down syndrome Endocrinology Evaluation Gene deletion Genetic counseling Genetics Health services administration Hispanic Americans Hospitals Immunology Interdisciplinary aspects Multidisciplinary teams Opinion Pathology Patients Pediatrics Social work Speech therapy White people |
title | The Unique Experience of a New Multidisciplinary Program for 22q Deletion and Duplication Syndromes in a Community Hospital in Florida: A Reaffirmation That Multidisciplinary Care Is Essential for Best Outcomes in These Patients |
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