Quality and Outcomes Reports - Herma Heart Center
Marfan Syndrome Clinic - Volume
Why we measure it - Marfan syndrome is a disorder involving the body's the connective tissue and affects approximately 50,000 people in the United States. The Marfan Syndrome Clinic at Children's Hospital of Wisconsin in Milwaukee is the largest clinic of its kind in the Midwest. Our specialists treat more than 250 pediatric and adult patients with a variety of different connective tissue disorders every year.
About the data - This graph includes new and follow-up clinic visits for patients with Marfan Syndrome or other related connective tissue disorders from 2009 through 2012.
Related dimensions of care:
What we're doing to provide the best care:
- Marfan syndrome can be difficult to diagnose due to its similar symptoms to other conditions. Our multidisciplinary team of experts work together to identify, manage and treat each patient's condition. Specialty teams include a cardiologist, orthopedic surgeon, ophthalmologist, geneticist, general surgeon, radiologist, nurses and other medical staff as needed.
- Our specialists take a global approach when caring for patients with Marfan syndrome. We draw upon our extensive clinical experience, research findings and educational initiatives to collect the best information available to provide comprehensive care to this unique patient population.
- Our cardiologists treat children and adults in our clinic and coordinate care with pediatric and adult physician specialists.
- We offer genetic testing and work closely with geneticist, Donald Basel, MD who sees both pediatric and adult patients.
- Each patient is managed by the same cardiologist. Follow-up appointments may include X-rays, echocardiography, CT scans and cardiac MRI if needed.
- We offer surgical and interventional treatment of aortic aneurisms and dissections.
- Our specialists support the ever-growing Marfan Syndrome patient population by traveling to multiple clinics statewide. Clinics are located in Milwaukee, Fond du Lac, Neenah and Waukesha.
- We train the future generation of doctors to care for the increasing number of patients with Marfan syndrome and connective tissue disorders across the state.
Patients and families:
- If you need to schedule or reschedule an appointment, please call Central Scheduling at (877) 607-5280 or (414) 607-5280 as soon as possible.
- Arrive 15 minutes before your scheduled appointment so we can gather needed information from you before you see the doctor.
- Bring the name, address, phone and fax numbers of your primary care and/or referring doctor so we can update them appropriately on your care.
- Bring a full list of the medications you are taking including over-the-counter medicines such as vitamins and supplements.
- Referring physicians can access our specialists for consultation or transport 24 hours a day. Call our physician referral line at (800) 266-0366.
- Health care providers from outside of our southeastern Wisconsin service area are encouraged to use our web-based
e-Consult service. This service is available for non-urgent patient cases only and gives providers access to our specialists to review patient cases, obtain medical advice or second opinions, and receive care recommendations for rare symptoms and illnesses.
e-Consult is not to be used by the general public, parents/guardians or families.
- Care guidelines for medical professionals
- Educational materials
- Pocket Directory
If you have questions about this Web page, email us or call (414) 266-6556.