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The diagnostic checklist was developed to assist practitioners diagnose, or rule out, CdLS.
Diagnostic criteria for CdLS were created by the CdLS Foundation’s Medical Director Antonie Kline, M.D., in collaboration with members of the Clinical Advisory Board of the CdLS Foundation and the Scientific Advisory Committee of the World CdLS Federation.
If molecular testing has identified a mutation in one of the associated genes, the individual has CdLS. Otherwise, clinical findings should meet facial criteria, as well as criteria for two to three of six other system categories. At least one of the involved systems should be in the areas of growth, development or behavior. If these criteria are met, then the individual is diagnosed clinically with CdLS.
Medical Specialty Cards
Our medical cards were developed to help ensure that providers have the most current information, testing recommendations and procedures pertaining to their specialty when treating individuals with CdLS.
These cards will help aid professionals in diagnosis and treatment of medical issues related to CdLS. Each specialty card highlights the professional’s specific field, as well as includes general statements about CdLS and common medical issues that are important for all professionals to be aware of and understand.
The ten areas of specialty are:
CdLS Clinics provide families with an invaluable head-to-toe evaluation by a full complement of experts—all in one day. There are currently four CdLS Clinics in the United States: The Multidisciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center; the Center for CdLS and Related Diagnoses at Children’s Hospital of Philadelphia (CHOP); Shriners Hospital for Children-Salt Lake City, UT; and St. Louis Children’s Hospital in St. Louis, MO.
It’s NEVER too early to start planning. The earlier you begin, the better your understanding will be of what’s available and what’s right for your child.”
Amy Loftus, mother of Eric (age 24)
CdLS Centers For Excellence
The CdLS Centers for Excellence program recognizes demonstrated excellence and outstanding achievement in research and/or clinical work related to CdLS. The work at these designated CdLS Centers for Excellence institutions has changed the landscape of what is known about the syndrome and how it can be managed:
• The Greater Baltimore Medical Center,
• Saint Louis University School of Medicine
• Children’s Hospital of Philadelphia
• The University of California, Irvine, and
• Stowers Institute for Medical Research.
International Treatment Protocols
“Due to the great variability of the CdLS spectrum, as well as in the care and management of individuals, a group of international experts have formed the “International CdLS Consensus Group” to make a series of recommendations. Experts in this group are part of the Scientific Advisory Council of the World Federation of CdLS Support Groups. These recommendations are outlined and explained throughout this document and the full list of recommendations is also available at the end.”
Materials for Professionals
The Foundation provides a host of educational resources that address common issues and challenges related to CdLS — all at no cost.
This informative handbook was designed to help people who are involved with the education of an individual with CdLS make informed decisions in this all-important area.
The Foundation offers articles covering various topics such as medical, behavioral and educational issues that are specific to individuals with CdLS.