Charles E. Schmidt College of Medicine, Florida Atlantic University, Boca Raton, FL 33431, USA.
Department of Allergy and Immunology, Joe DiMaggio Children's Hospital, Hollywood, FL 33021, USA.
Genes (Basel). 2022 Oct 26;13(11):1949. doi: 10.3390/genes13111949.
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.
2018 年，佛罗里达州的乔·迪马乔儿童医院（Joe DiMaggio Children's Hospital）按照 22q11.2 缺失患者最佳护理的新模式，创建了该州首个 22q11.2 多学科项目。自成立以来，尽管面临挑战，该诊所仍蓬勃发展。我们的 22q 诊所拥有 149 名患者，年龄在 0 至 21 岁之间。在这 149 名患者中，有 138 名是 22q11.2DS 患者：74 名女性和 64 名男性（44%为西班牙裔，35%为白种人，11%为非裔美国人，3%为亚洲人，7%为多种族）。有 11 名患者属于 22q11.2 重复组；7 名女性和 4 名男性（50%为西班牙裔，30%为白种人，10%为亚洲人，10%为多种族）。我们的多学科团队已经发展到包括 12 个不同的专业，以更好地为不断增长的患者群体服务，并通过提供虚拟诊所来适应大流行。尽管世界各地有许多 22q 多学科诊所，但我们的诊所具有特殊的特点。我们的患者群体种族多样，有一大批主要讲双语的提供者，他们对 22q 缺失/重复综合征充满热情并具有专业知识。我们的 22q 诊所位于一家社区医院，依靠当地 22q 患者支持团体的合作。该项目的独特之处还在于，它现在正在扩大规模，为成年 22q 患者提供护理。我们的诊所再次证明，多学科护理是为 22q 患者实现最佳治疗效果的最佳途径，只要有一个充满热情和敬业精神的医疗团队愿意为这些患者合作，一个 22q 多学科项目就可以在社区医院蓬勃发展、取得成功并不断壮大。
