PTEN Cowden Clinic

Overview

For children and adults with a confirmed or possible diagnosis of PTEN Hamartoma Tumor syndrome (PHTS), Cowden syndrome (CS), Bannayan-Riley-Ruvalcaba syndrome (BRRS), or other conditions within the PTEN spectrum.

What Is PTEN?

PTEN is one of the body’s many tumor suppressor genes. When they work properly, tumor suppressor genes help to control cell growth. When they are not functioning properly, cells can grow out of control and turn into either benign or malignant tumors. Many people with Cowden syndrome, Bannayan-Riley-Ruvalcaba syndrome, and a few other genetic conditions have been found to have PTEN gene mutations as the cause of their medical concerns. These conditions as a group are referred to as PTEN Hamartoma Tumor syndrome (PHTS). Dr. Charis Eng, our medical director and chairman of the Cleveland Clinic Genomic Medicine Institute, led the research team which in 1997 discovered the causative relationship between the PTEN gene and Cowden syndrome.

What Do We Do?

Some patients with PHTS, CS, or BRRS have health needs for which coordinated visits with multiple subspecialists are helpful. Our clinical team includes healthcare providers who have seen and treated other patients with PHTS/CS/BRRS and are knowledgeable regarding these rare syndromes. Our clinical coordinator can discuss your/your child’s specific needs and help arrange any appropriate visits.

Making an Appointment

Please call 216.636.1768 or e-mail PTEN Cowden Clinic.

Our Team

Each patient will see Dr. Eng for a clinical genetics assessment, and may be scheduled for visits with these or other providers depending on the patient’s needs and physician availability.

Medical Director and Clinical Cancer Geneticist

• Charis Eng, MD, PhD

Adult Psychology/Behavioral Health

• Karen Hurley, PhD

Autism

• Leslie Speer, PhD

Brain Tumor Oncology

• Glen Stevens, DO, PhD

Dermatology

• Joan Tamburro, DO
• Christine Warren, MD

Endocrine Surgery/Endocrinology

• Eren Berber, MD
• Judy Jin, MD
• Vikram Krishnamurthy, MD
• Christian Nasr, MD
• Joyce Shin, MD

Gastroenterology

• Carol Burke, MD
• James Church, MD
• Matthew Kalady, MD
• Gautam Mankaney, MD

Gynecologic Oncology

• Chad Michener, MD

High-Risk Breast Care

• Holly Pederson, MD

Neuropsychology

• Robyn Busch, PhD

Pediatric Gastroenterology

• Kadakkal Radhakrishnan, MD

Pediatric Neurology

• Neil Friedman, MBChB
• Sumit Parikh, MD

Pediatric Psychology

• Kate Eshleman, PsyD

Surgical Oncology

• Stephen Grobmyer, MD

Urology

• Steven Campbell, MD, PhD

Vascular Surgery

• Behzad Farivar, MD

FAQs

What can I expect during my genetics appointment?

You will initially meet with a PTEN genetic counselor during your genetics appointment who will:

• Explain the purpose of your visit
• Collect an updated medical and family history
• Answer any questions you have about PTEN-related syndromes and your medical management

Dr. Charis Eng will join the appointment and:

• Ask you additional questions
• Conduct a physical evaluation, as needed
• Talk to you about research/clinical updates, as needed

We will help you:

• Create a management plan for your care moving forward, including what specialist doctors to see

Who do I speak to first to get the scheduling process started?

Our team can help you schedule your PTEN-related multi-disciplinary (specialist doctors) appointments!

It is the patient’s responsibility to reach out to the clinic and speak with the PTEN clinic navigator to schedule a call with the genetic counselor and begin the scheduling process for the year.

During the 30-minute intake call, the genetic counselor will:

• Gather information about your current medical management
• Ask you about your genetic testing history
• Talk to you about what specialists you may want to see
• Ask you about what dates do not work for you during the year
• Answer questions about the clinic
• Talk to you about what types of records we will request

PLEASE NOTE: The intake call is not a clinical appointment. Please reserve all medical management questions for the genetics and specialist appointments.

When will I receive my schedule?

It is difficult to predict how long it will take to complete a schedule once registration and financial clearance are complete. Each specialist has their own practice in addition to being a part of our PTEN clinical team. We will do everything within our power to schedule your appointments in a timely manner.

• You will be emailed and/or mailed a schedule with the dates, times, locations and names of providers
• Your first appointment may not always be genetics
• If you have specific questions about non-genetics appointments on your schedule, feel free to contact the provider’s office any time!

What if I have to cancel my appointments?

Please make every attempt to keep the finalized appointments. In a rare situation when appointments must be cancelled, we will make every attempt to reschedule your visit.

The PTEN Clinic providers are in high demand and we cannot guarantee whether all providers will be available for newly requested dates.

How do I check the status of my schedule?

Did you know that Cleveland Clinic MyChart users can view their past and future appointments? You can see what appointments we have scheduled for you by signing up for MyChart.

• MyChart registration

You may also reach out to us for an update on the scheduling process.

How do I get registered for the clinic?

If you are a new patient, the PTEN clinic navigator will help you get registered. Registration paperwork must be complete before the scheduling process begins.

All patients must submit updated health insurance and get financially cleared for each of the specialists before an appointment can be made.

How do I send my records?

The PTEN clinic navigator will send you a Records Release Authorization forms to sign. We can request records on your behalf from your local providers.

If you have a copy of your records already, you may send them to us after the intake call to PTENrecords@CCF.ORG.

Please note, our specialists only need your most recent PTEN related records (last 1-3 years). If we need additional documents, this will be discussed with you.

Please bring a copy of your imaging CDs to your specialty appointments.

How much will I have to pay for clinical services?

Costs vary by insurance type. You need to contact your insurance company directly and complete a benefits investigation beforehand for each of your clinical appointments to learn about:

• Out-of-pocket costs
• Remaining deductible
• Out-of-network policies
• Covered services

Co-pays will be collected at the time of the appointment.

Will I get a bill for research appointments?

Some of our families are participating in a research study. There may be research appointments that are mandatory for the protocol. Research appointments are not billed to your health insurance.

Families may elect to have additional appointments outside of the research protocol. All appointments outside of the research protocol are clinical appointments and will be billed to your health insurance.

When will I receive my clinical genetic testing results?

If testing is needed, you will be provided with a timeline during your genetics visit.

• Genetic tests that are run through a commercial clinical lab may take 2 to 4 weeks to send us the results

How do I receive consult notes from the appointments and communicate with the specialists?

After your visit, it may take anywhere from a few days to two weeks for the final clinic notes from your Cleveland Clinic appointments to reach you and the healthcare providers you requested to receive a copy. You are always welcome to recontact any Cleveland Clinic provider you have seen with questions following your visit. We are also glad to communicate personally with any of your local healthcare providers about your case as needed.

It would be helpful to have a list of your local medical providers available to give the clinicians you are seeing so that your medical records from your appointments in Cleveland are sent to everyone you would like to receive a copy.

You may register for Cleveland Clinic MyChart, an online health management tool that connects to you to portions of your electronic medical record, including consult notes and testing results from your appointments. You can also contact your specialists following the appointment with non-urgent clinical questions using MyChart message!

• MyChart registration

Additionally, you may request each provider’s office to send records from your visit to your local providers.

How long can I expect to stay at Cleveland and what are my lodging options?

You may need to be at the clinic anywhere from 1 to 5 days. It is the responsibility of the patient to reserve hotel accommodations.

The Medical Concierge service at Cleveland Clinic can assist out-of-state patients organize their travel needs, including hotel recommendations, car rental, and other services.

• On campus hotels, please visit Cleveland Clinic Lodging website.
• Off campus hotels can be found using websites such as www.kayak.com and www.expedia.com.
• For low cost options, try www.airbnb.com to find an apartment or house you can rent for a few days.
• Other lodging information.
• Maps and Directions (Cleveland Clinic Main Campus & Family Health Centers).

How do I get from one appointment to another?

There are many options for traveling between buildings on main campus.

1. You may rent a car and drive to each location; or you may wish to walk.
   
   • For a full listing of patient parking options
2. You may utilize the Cleveland Clinic shuttle service which stops in front of campus locations every 15-20 minutes. Patients and visitors can arrange for a shuttle with any of our Redcoats or Hotel Hospitality specialists, or by calling 216 – 444- 8484.
   
   • For more information about shuttles
3. You may take a taxi or an Uber, depending on your preference.
4. Note: There are only two shuttle times available from the main campus to Shaker Campus. Patients going to the Center for Autism at the Shaker Campus need to utilize taxis, Ubers or a rental vehicle.

Cost & Insurance

Cleveland Clinic has experience working with a broad range of insurance providers. We strongly recommend that you contact your insurance company prior to your appointment date to verify coverage. We are happy to write letters of medical necessity as needed to help you obtain coverage for visit costs. To learn more about billing options and financial assistance, review our billing and insurance information.

Are any visit costs covered by the PTEN research study?

Briefly, no. The PTEN study, in which you/your child may or may not already be a participant, does not cover clinical or travel costs for any patient.

Patient Testimonial

"Working with the Cleveland Clinic and their PTEN Study team delivers calm clarity following what can feel like choppy waters after a diagnosis. Contacting a provider to refer me into the program and traveling to Cleveland were the best medical decisions I have ever made. Where else would a PTEN patient want to be than with Dr. Charis Eng, the geneticist who discovered the gene our mutation is on? Having a single point of Cleveland contact to plan my visit, coordinate my team care, and follow up with questions brought focus and a sense of manageability to my family and me. What more could someone with a rare genetic disorder ask for?"

– Brenda, 37, Iowa

Resources

Helpful Contacts

India Clayton
PTEN Clinic Navigator
Phone: 216.444.4044
Email: pten@ccf.org

Shreya Malhotra MS, LGC
PTEN Genetic Specialist/Counselor

Beth Crouser, MBA
PTEN Study Research Coordinator ll
Email: pten@ccf.org

Lisa Bandy
Patient Service Specialist

Sheree Garner
Patient Access Coordinator

Cleveland Clinic Billing Representative
For all billing, insurance and financial assistance questions
Phone: 844.500.9451 | 866.621.6385

Websites for additional resources

• About the PTEN Research Study
• About the PTEN Hamartoma Tumor Syndrome foundation
• About Billing, insurance and financial assistance
• MyChart Registration