Effects of Physical Training on Bone and Muscle Quality, Muscle Strength, and Motor Coordination in Children With NF1

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Brief Title

Effects of Physical Training on Bone and Muscle Quality, Muscle Strength, and Motor Coordination in Children With NF1

Official Title

Effects of Physical Training on Bone and Muscle Quality, Muscle Strength, and Motor Coordination in Children With Neurofibromatosis Type 1

Brief Summary

      A physical training program will improve quality of life, participation in physical activity,
      motor coordination, muscle strength, and bone and muscle strength in children with
      neurofibromatosis type 1.
    

Detailed Description

      Disorders of the Ras pathway have significant phenotypic overlap and include Noonan syndrome,
      Cardiofaciocutaneous syndrome (CFC syndrome), Legius syndrome, Costello syndrome and
      neurofibromatosis type 1 (NF1). NF1 is one of the most common genetic disorders presenting in
      childhood with an incidence of 1/3000. NF1 is associated with skeletal abnormalities such as
      short stature, scoliosis, and long bone fracture with non-union. We recently reported that
      children with NF1 have abnormalities of bone and muscle architecture as evidenced by
      decreased bone mineral density, decreased bone strength, and low muscle mass, all of which
      may predispose them to fractures and scoliosis (Stevenson et al., 2005, 2007, 2009). Our
      preliminary data show that children with NF1 have poor motor coordination and muscle
      strength, potentially secondary to abnormal neuromotor learning. We hypothesize that poor
      motor coordination and decreased muscle strength contribute to the osteopenia in NF1. Our
      objective is to identify effective and non-invasive strategies to improve motor coordination,
      muscle strength, and bone and muscle architecture in children with disorders of the Ras
      pathway, in hopes of decreasing fractures and improving physical activity levels. Plyometric
      physical training consists of quick, high-intensity, weight-bearing movements, and is an
      encouraging intervention for use in these children.
    


Study Type

Interventional


Primary Outcome

Bone & muscle quality, DXA, pQCT, & bone ultrasound.

Secondary Outcome

 Motor proficiency BOT-2. Muscle strength force plate & dynamometer. Quality of life questionnaires.

Condition

Neurofibromatosis Type 1

Intervention

Plyometric training program

Study Arms / Comparison Groups

 Plyometric physical training
Description:  Individualized plyometric training program to increase strength, coordination, and bone density.

Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information


Recruitment Status

Other

Estimated Enrollment

36

Start Date

February 2010

Completion Date

February 2014

Primary Completion Date

February 2014

Eligibility Criteria

        Inclusion Criteria:

          -  Fulfill NIH clinical diagnostic criteria

        Exclusion Criteria:

          -  Visual impairment

          -  Participation in a simultaneous medical intervention trial

          -  Orthopedic procedure within the last 6 months.

          -  Pregnancy

          -  Home location greater than 3-4 hours drive time from Shriners Hospital

          -  Tibial pseudarthrosis
      

Gender

All

Ages

4 Years - 19 Years

Accepts Healthy Volunteers

No

Contacts

David Stevenson, MD, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT01058330

Organization ID

SLC00038711


Responsible Party

Principal Investigator

Study Sponsor

Shriners Hospitals for Children

Collaborators

 Thrasher Research Fund

Study Sponsor

David Stevenson, MD, Principal Investigator, Shriners Hospitals for Children


Verification Date

March 2021