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Managing CDD

CDKL5 clinical experts published the International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder in 2022. Using a Delphi consensus methodology they performed a literature search and considered mortality, morbidities, diagnosis, treatment, and surveillance of CDD. Based on these findings, they identified 84 questions for consideration in the Delphi process. The items queried all aspects of CDD including initial assessments, diagnosis, treatment options, follow-up, and surveillance. The questions were formed by a core committee and reviewed by a subcommittee. Families and caregivers also contributed by review of the design. The Delphi results were analyzed by committees, which consisted of experts in different aspects of CDD from the US, Europe, and the UK. Patient advocacy groups were also part of this process.

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Genetic Testing

Genetic testing should be offered to all individuals with DEE to confirm the diagnosis.

Neurological

General

Neuroimaging

EEG

Anti-Seizure Drugs

Epilepsy Surgery

Stereotypes and Movement Disorders

Somnology

Systemic

Auxology

Gastrointestinal Management, Including Assessment and Management of Feeding

Respiratory

Cardiology

Dermatology

Urology

Audiology

Dental Care

Financial

Therapy Assessments and Interventions

Neurorehabilitation

Development

Ophthalmology

Communication

Orthopedics

Physiotherapy (PT)

International Registry

We invite you to register your loved one living with CDD at  Connect CDKL5

Citation

Amin S, Monaghan M, Aledo-Serrano Al, Bahi-Buisson N, Chin RF, Clarke AJ, et al. International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder Frontiers in Neurology (2022) 13: 1-16
doi: 10.3389/fneur.2022.874695