Nutritional Aspects of Rett Syndrome

This study has been completed.

First Received: February 24, 2000 Last Updated: June 23, 2005 History of Changes

Sponsor:	Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Collaborator:	Baylor College of Medicine
Information provided by:	Office of Rare Diseases (ORD)
ClinicalTrials.gov Identifier:	NCT00004656

Purpose

OBJECTIVES: I. Determine dietary macronutrient intake in children with Rett syndrome and in healthy controls.

II. Measure sleeping and awake metabolic rates in various positions, i.e., reclining, sitting, and standing, by whole-room indirect calorimetry and isotope dilution.

III. Quantify activity patterns by time-motion studies using 24-hour activity records and 12-hour videotaping.

IV. Correlate 24-hour activity patterns with 24-hour heart rate telemetry and short-term oxygen consumption.

V. Estimate 24-hour fecal and urinary energy losses. VI. Determine body composition by clinical anthropometry, whole-body potassium counting, and total-body electrical conductance.

VII. Calculate apparent energy needs based on measurement of energy intake and expenditure.

Condition	Intervention
Rett Syndrome	Procedure: Metabolic assessment with body composition evaluation

Study Type:	Interventional
Study Design:	Diagnostic

Resource links provided by NLM:

Genetics Home Reference related topics: L1 syndrome Rett syndrome

MedlinePlus related topics: Rett Syndrome

U.S. FDA Resources

Further study details as provided by Office of Rare Diseases (ORD):

Study Start Date:

May 1993

Detailed Description:

PROTOCOL OUTLINE:

All participants undergo extensive nutritional and metabolic assessment with body composition evaluation. Studies include macronutrient intake, body fat, lean muscle mass, metabolic rate, and time-action studies; and 24-hour cardiac telemetry. Rett syndrome girls also receive a hemogram and hand x-ray.

Eligibility

Ages Eligible for Study:	5 Years to 18 Years
Genders Eligible for Study:	Female
Accepts Healthy Volunteers:	Yes

Criteria

PROTOCOL ENTRY CRITERIA:

Patients aged 5 to 18 with Rett syndrome Able to sleep and awaken alone

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT00004656

Sponsors and Collaborators

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Baylor College of Medicine

Investigators

Study Chair:

Kathleen J. Motil

Baylor College of Medicine

More Information

No publications provided

Study ID Numbers:	199/11814, BCM-CNRC-H1637
Study First Received:	February 24, 2000
Last Updated:	June 23, 2005
ClinicalTrials.gov Identifier:	NCT00004656 History of Changes
Health Authority:	United States: Federal Government

Keywords provided by Office of Rare Diseases (ORD):

Rett syndrome
neurologic and psychiatric disorders
rare disease

Additional relevant MeSH terms:

Disease
Nervous System Diseases
Neurodegenerative Diseases
Mental Retardation
Child Development Disorders, Pervasive
Rett Syndrome
Pathologic Processes
Heredodegenerative Disorders, Nervous System

Genetic Diseases, Inborn
Mental Disorders
Syndrome
Mental Disorders Diagnosed in Childhood
Genetic Diseases, X-Linked
Neurologic Manifestations
Mental Retardation, X-Linked
Neurobehavioral Manifestations

ClinicalTrials.gov processed this record on November 09, 2009