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.
摘要：
2018年，佛罗里达州的第一个22q11.2多学科计划在JoeDiMaggio儿童医院创建，遵循22q11.2删除患者的最佳护理新范式。自从就职以来,尽管面临挑战，诊所还是蓬勃发展。我们的22q诊所有149名0-21岁的患者。从这个总数中，138人是22q11.2DS：74名女性和64名男性（44％的西班牙裔，35%的白种人,11%的非洲裔美国人,3％的亚洲和7％的多种族）。22q11.2重复组中有11名患者；7名女性和4名男性（50％西班牙裔，30％白种人10％亚洲人和10％多种族）。我们的多学科团队已经发展到包括十二个不同的专业，以更好地服务于我们不断增长的患者人群，并通过提供虚拟诊所来适应大流行。尽管全球有许多22q多学科诊所，我们的诊所有特色。我们有一个种族多元化的患者群体和一个主要是双语提供者的大团队，他们对22q缺失/重复综合征充满热情并拥有专业知识。我们的22q诊所位于社区医院，依靠当地22q患者支持团体的合作。该计划也是独一无二的，因为它现在正在扩展到治疗成年22q患者。我们的诊所是多学科护理如何在22q患者中实现最佳结果的最佳方式的另一个活生生的例子。如果有一个充满激情和专注的提供者团队愿意为这些患者合作，22q多学科计划可以蓬勃发展，在社区医院成功成长。
