Learning that your child may have a genetic condition can be a frightening and confusing time. We are available to help in finding a diagnosis for your child, as well as to explain genetic testing options and results. Our goal is to support you and your family with your emotional as well as your medical needs.
Our pediatric specialty clinics include:
- Pediatric Hearing Management Clinic (hearing loss)
- Neurofibromatosis Clinic (NF1, NF2)
- Neurogenetics & Metabolism Clinic (autism, lysosomal disorders, mitchondrial disorders)
Scheduling an appointment
Prior to requesting an appointment, you will need to obtain a referral from your physician. If you are a patient outside the Cleveland Clinic Health System, please have your physician complete a referral form and fax to 216.445.6935. To learn more about how to prepare for your appointment, review the "Before your visit" tab.
The Center for Personalized Genetic Healthcare (CPGH) is committed to providing comprehensive clinical genetic services, education and support to patients and family members. Our team of genetic experts will work with other Cleveland Clinic primary care providers and specialists to personalize your child's care by incorporating their genetic information into their overall health care plan.
- Adnan Alsadah, MD
- Angelika Erwin, MD, PhD
- David Flannery, MD
- Marvin Natowicz, MD, PhD
- Vickie Zurcher, MD, FAAP, FACMG
- Lauren Palange, MS, LGC
- Allison Schreiber, MS, LGC
- Amy Shealy, MS, LGC
- Sarah Mazzola, MS, LGC
Who Should Be Seen
You should consider having your child evaluated by a genetics expert if they have a family and/or personal history of the following:
- Developmental delay or learning difficulties
- Birth defects, such as spina bifida, cleft palate, brain malformations, heart defects, etc.
- Unusual physical features
- Hearing loss
- Abnormal growth
- Muscular dystrophy or other neuromuscular disorder
- An abnormal genetic test result
- A known or suspected genetic condition
- A family history of a genetic condition
- Parents interested in learning about recurrence risks
Contact your child's primary care provider or the Center for Personalized Genetic Healthcare (CPGH) to discuss whether a genetic counseling evaluation is appropriate for your child.
What to Expect
Before Your Child's Visit
Prior to requesting an appointment, you should obtain a referral from your child's physician. If your child is a patient outside the Cleveland Clinic Health System, please have your child's physician complete a referral form and fax to 216.445.6935.
Collect Your Family Health History
To make the most out of your child's appointment, you should gather family health history information prior to their appointment. Specifically, it may be helpful to talk with relatives about the following:
- Does anyone have a known genetic disorder or has anyone had genetic testing?
- Does anyone have learning problems and/or autistic spectrum disorder?
- Has anyone been born with a birth defect(s)?
- Are there any family members with unusual physical findings or abnormal growth patterns?
- Have any children died young?
- Are there any relatives with seizures or epilepsy?
Collect Your Child's Medical Records
If your child is a patient outside the Cleveland Clinic Health System, you should send an authorization for the release of medical records form to each external facility. You may arrange to have medical records faxed (30 pages or less) to our department, 216.445.6935 or sent postal mail.
Release of medical information
Center for Personalized Genetic Healthcare
Attn: Pediatric Genetics
9500 Euclid Ave. R4
Cleveland, OH 44195
During Your Child's Visit
We will provide personalized expert counseling and education to you and your family. A pediatric genetics expert (genetic counselor and/or clinical geneticist) will meet with you and your child to determine the most appropriate way to help your family. Your child may also be scheduled with other Cleveland Clinic pediatric specialists during their visit based on their medical needs and physician availability.
Our comprehensive method for genetic counseling involves:
- Diagnosis of a genetic condition through review of family and medical history, examination by a clinical geneticist, and if appropriate, genetic testing
- Review of any abnormal genetic test results (if applicable)
- Education about your child's specific diagnosis and any associated health risks if known
- Suggestions for future medical care to optimize your child's health
- Discussion of health risks to family members
- Recommendations regarding genetic testing for at-risk family members and coordination of testing, if desired
Following Your Child's Visit
After your child's visit, it may take anywhere from a few days up to two weeks for their clinical appointment notes to reach the healthcare providers that you requested to receive a copy. We are also glad to communicate with your child's healthcare providers about his/her case as needed. You are always welcome to follow up with us with questions regarding your child's visit.
Cost & Insurance
Genetic counseling and testing are billed as two separate services.
Many insurance companies will cover 96040, which is the CPT code for genetic counseling. However, we do ask that you check with your insurance company to verify that your plan does cover the cost. If your plan does not cover 96040, please contact us at 216.636.1768 and we can discuss the proper payment arrangements with you.
If genetic testing is indicated, your genetic counselor will discuss costs and insurance coverage during your appointment.
Some patients are concerned that their genetic information may be used against them. To learn about your patient rights and protections in place to prevent genetic discrimination, read this article on GINA.
To learn more about billing options and financial assistance, review our billing and insurance information.