Contact Us
Dr. Kathryn Swoboda
University of Utah School of Medicine
Department of Neurology
30 North 1900 East, Room 3R413
Salt Lake City, UT 84132
Phone 801.585.9717 to reach any of our coordinators
Phone 801.581.3551 to reach Dr. Sandra Reyna, co-director
Fax 801.587-9346
or email our coordinators:
Download a floor plan of Primary Children's Medical Center
Comprehensive Clinical Consultations for Patients with Spinal Muscular Atrophy
We see SMA patients regularly in clinical consultation and are happy to help work with your local physician, whether or not you are interested in participating in a research study. If you or your child has a confirmed diagnosis of SMA, and are interested in coming to Utah for a comprehensive clinical evaluation, the following information can help to guide you through this process. All individuals with SMA who we see in clinical consultation have the option, but not an obligation, to enroll in our natural history database, which gives us permission to collect information about you or your child’s medical history, examination, diagnostic testing that helps us better understand the disease. Dr. Swoboda and Dr. Sakonju see patients weekly in our SMA clinic. We also recommend that you consider an independent evaluation by Dr. Aga Lewelt, a physiatrist, who has special expertise in rehabilitation, exercise and therapy programs.
In most cases, if you are coming from out of town, it is best to plan to stay for a two to three day period. If you elect to participate in our natural history studies, lodging is often available in our Center for Clinical Translational Science. The first day typically includes comprehensive consultations with Drs. Swoboda or Sakonju, and Dr. Lewelt, if desired. We will obtain detailed information about you or your child’s medical history, perform a physical examination, and if indicated, perform neurophysiologic testing to help us have a better idea regarding disease severity. We will ask you to fill out a 3-day dietary record before your scheduled visit. If you submit it via email or FAX before you arrive, Dr. Swoboda or Sakonju can go over the analysis with you during the appointment. If any lab work needs to be done, it will also be completed at our clinical visit. If your insurance has approved coverage, we also typically perform DEXA bone density testing that first day. The second day includes a physical therapy assessment, for which you will not need insurance pre-authorization. This assessment may or may not include timed tests, gait analysis, fine motor function and strength testing, depending on the individual. It is worthwhile for you to discuss you and your child’s needs during the visit ahead of time with one of our coordinators. Some insurance companies may NOT cover certain services out of network, such as DEXA, laboratory testing, or pulmonary function testing, for instance, but will allow a clinical consultation. In that case, coordinating such testing at home to be completed prior to our consultation will help us make the most of the visit, and provide the best possible recommendations for a future care plan for you or your child.
We recommend bringing a copy of any results of recent lab work, prior clinical consultations by a variety of health professionals, pulmonary function testing (PFT) results, bone density assessments, and sleep (polysomnogram) or swallow studies. Some of this testing may be clinically indicated for your child, and could be peformed while you are here; however, not all testing completed at this facility may be covered by your insurance. You will want to contact your insurance company to find out what testing is covered and if any of the testing will require pre-authorization, as is common for bone density (DEXA) scans. In order to decide what testing should be scheduled, it is helpful to forward records several weeks in advance for review by the team. In order to provide the best guidance for nutritional management, we request that you download and complete a detailed 3 day dietary record one week prior to the visit. You can either bring it with you to the appointment, or fax or email it back to us ahead of time:
Click here to download a 3 Day Dietary Record.
Laboratory workup during the visit may include a complete blood count, comprehensive metabolic panel, carnitine profile, quantitative plasma and urine amino acids, amylase and lipase. If you or your child takes any medication requiring a drug level, we may also want to check this during your visit as well. Please bring your insurance card and information with you, as it will be necessary to register your child for billing for any clinical testing performed during the visit.
If you have not already done so, please contact Tara Newcomb, clinical study coordinator, who helps coordinate scheduling for our SMA clinic. She can be reached via email at taran@genetics.utah.edu or by telephone at 801-585-9055.
In preparation of your visit with us at Primary Children’s Medical Center (PCMC), the following lodging and transportion information may be helpful in arranging your stay in Salt Lake City, Utah. There are various hotels and shuttles around town from which to choose. Their names and contact information are below.
University Center for Clinical and Translational Sciences (CCTS, formerly GCRC)
The CCTS is located in the University Hospital and is staffed by nurses. Lodging and meals are free for the patient and guardians during your 2-night stay. A coordinator or nurse can help you find your appointment in PCMC from the CCTS. Only those subjects participating also in a research protocol are eligible to stay in the GCRC/CCTS facility. Our SMA natural history study does not require additional testing during your visit, but allows us to use data collected during you/your child's clinical evaluation and include it in our database. You must contact Summer Davis to help coordinate your stay if you are interested in using these facilities at no cost.
The University Guesthouse
110 South Fort Douglas Boulevard
Salt Lake City, UT 84113-5036
Telephone: 801-587-1000 or 888-416-4075 (toll free)
The rate for families of patients at PCMC is approximately $55 per night. The University of Utah campus shuttle can pick you up and take you to the University Hospital, located 2 blocks away. From there you will need to walk through an indoor tunnel to PCMC.
University of Utah campus shuttle
Telephone: 801-581-4189
The "Blue" shuttle heads from the Guesthouse to the hospital, and the "Red" shuttle heads in the opposite direction. These shuttles run every 10 minutes during the day and are handicapped accessible.
The Marriott University Park
480 Wakara Way
Salt Lake City, Utah 84108
Telephone: 801-581-1000
The rate for families of patients at PCMC is approximately $69 per night. They offer complementary rides to Primary Children's Hospital.
Chase Suites
765 East 400 South
Salt Lake City, UT 84102
Telephone: 801-532-5511 or 888-433-6071 (toll free)
They offer a complementary shuttle to and from the airport or PCMC if one is available. None of their shuttles are handicapped accessible. They are scheduled on a first come, first served basis, so try and arrange this service in advance. Also, the light rail public transit has a stop right in front of the hotel and in front of PCMC. The PCMC stop is the last stop on the route, so you can't miss it.
Xpress Shuttle
Telephone: 801-596-1600
Website: http://www.expressshuttleutah.com/
Reservations should be made 24 hours in advance.
For one adult and one child, the cost is $18 per trip, and 2 for adults and one child, it is $56 per trip.
Yellow Cab
Telephone: 801-521-2100No reservations are required
From the airport to Salt Lake City, the cost is $28-30 per trip for one or two adults.
We look forward to seeing you. You can contact the study coordinators if you have any additional questions.