Change to Medical Genetics Clinic patient evaluations

During fiscal year 2022, the clinical services of the Division of Medical Genetics and Genomics are restructuring to focus on providing the service to patients with known or suspected underlying genetic etiology. In keeping with this goal, and to serve the rare disorder patient population in a timely manner, only patients with genetic connective tissue diseases will be evaluated in the Medical Genetics Clinic. This redirects the medical genetic outpatient clinical services to patients with hypermobile EDS (hEDS) and hypermobility spectrum (HSD) to the general internal medicine or the general pediatrics outpatient clinical services.  

Reaching this conclusion is based on the facts that hEDS and HSD are outside the scope of practice of the division of Medical Genetics and Genomics, there is no added value to the care of the patients and their families, and is in agreement with the national policies and protocols. Patients would benefit more from referrals to general internal medicine or general pediatrics depending on the age of the patients. These departments will better be able to coordinate the conservative and symptom-focused therapy, including physical therapy. This would allow the Pediatric division of Medical Genetics as well as Genomics/genetic counselors to provide better and timely services to the other types of EDS that have a genetic basis for their disease. 

As of Feb. 1, 2022, the Division of Medical Genetics and Genomics of the Stead Family Department of Pediatrics will only accept a referral in the Connective Tissue Disorder (CTD) clinic based on specific criteria as outlined in the letter attached. There are presently approximately 500 patients in the work queue for Connective Tissue Disorder evaluation that will be seen over the next year in our clinic. The policy will only apply to referrals received after Feb. 1, 2022.  

For questions please contact Alpa Sidhu, MBBS, PhD, at alpa-sidhu@uiowa.edu.