GCB Masthead
Fragile X Clinic The goal of the Fragile X Clinic is to provide a comprehensive array of testing and evaluation services for children and adults with Fragile X syndrome, and Fragile X-Associated Disorders (FXD) as well as provide referral services as necessary. Kennedy Krieger’s Fragile X Clinic is a member of the Fragile X Clinical and Research Consortium (FXCRC).

Kennedy Krieger Institute’s Fragile X Clinic is a multidisciplinary program geared toward providing the most comprehensive evaluation and treatment services for children and families with Fragile X-Associated Disorders (FXD.) The clinic is a founding member of the Fragile X Clinical and Research Consortium, the network of Fragile X clinics in North America.

Contact:

Lia Boyle
Clinic Coordinator
443-923-7619 (phone)
443-923-7696 (fax)
E-Mail: Boylel@kennedykrieger.org

Services:

The Fragile X Clinic offers the following types of appointments:

  1. Record review


  2. Team evaluation (neuropsychology, speech and language, psychiatry, neurology), including a wrap-up meeting, with follow-ups available.


  3. Appointments can also be made for the following services, by request:

    Audiology
    Augmentative Communication
    Behavioral/Psychological Service
    Family Training/Support
    Medical/Developmental Evaluation
    Medication Consultation
    Neurology
    Nursing Services
    Occupational Therapy
    Physical Therapy
    Psychiatric Evaluation
    Speech Therapy
We also provide referrals for: Genetic Testing/Counseling, Cardiology, Ophthalmology, etc.

Protocol Prior to Visit:

We hope that the following information will be helpful to you as you plan your visit to the Fragile X Clinic:

  1. Prior to scheduling an appointment, relevant documents will be reviewed in order to determine how the Fragile X Clinic can best serve the needs of your child. These documents include, but are not limited to, the following:

    Lab results of child’s Fragile X test
    Lab results of Fragile X tests of any other tested family members
    Reports from any psychological evaluations of the child
    Reports from any cognitive evaluations of the child
    A list of support services (occupational therapy, physical therapy, etc.) the child is currently receiving
    A list of the child’s current and past medication
    Reports from the child’s ophthalmological evaluations
    The child’s most recent IEP or school records
    Other medical records, as relevant

    For any questions about appropriate documents, contact the Clinic Coordinator.

  2. If you are traveling from out of town, please make arrangements for lodging. Notify the hotel in advance that you are being seen at the Kennedy Krieger Institute in order to receive a discount. The following hotels are located within close proximity to the Clinic:

    Cross Keys Radisson Hotel
    Tremont Park Hotel
    3. Tremont Plaza Hotel

  3. The Fragile X Clinic in the Center for Genetic Disorders of Cognition & Behavior is located at Kennedy Krieger Institute’s new Clinical Research building at 716 North Broadway, across from the main Kennedy Krieger building. Please use the following link for directions.

  4. Assessments at the Fragile X Clinic are tailored to your child’s specific needs, and therefore differ based upon individual circumstances. A full, comprehensive assessment protocol at the Clinic requires two days, whereas consultations for medication adjustment or record review typically require a few hours.After reviewing your relevant documents, a clinician at the Fragile X Clinic will determine what appointment or appointments are best suited for your situation.
Fragile X Syndrome Family Resources Websites

 The National Fragile X Foundation
[http://www.fragilex.org/]

Conquer Fragile X Foundation
[http://www.conquerfragilex.org/]

FRAXA Research Foundation
[http://www.fraxa.org/]

NIH Office of Rare Diseases
[http://rarediseases.info.nih.gov/]

National Organization for Rare Disorders
[http://rarediseases.org]

The National Fragile X Foundation
[http://www.fragilex.org/]

Articles In the News

[Fragile X Syndrome: Awareness Coming of Age (Pediatric News, May 2008)

Suggested Reading

Schopmeyer, Betty and Fonda Lowe. The Fragile X Child. San Diego: Singular, 1992.

Hagerman, Randi J. and Paul J. Hagerman. Fragile X Syndrome: Diagnosis, Treatment, and Research. Baltimore: The Johns Hopkins University Press, 2002.

Weber, Jayne D. Children with Fragile X Syndrome: A Parents’ Guide. Bethesda: Woodbine, 2000.

Dew-Hughes, Denise. Educating Children with Fragile X Syndrome: A Multi-Professional View. New York: RoutlededgeFalmer, 2002.

Parker, James N. and Philip M. Parker. The 2002 Official Patients’ Sourcebook on Fragile X Syndrome. San Diego: Icon Group International, 2002.