Baltimore, MDNCT05829668Now EnrollingIRB Ready

Cornelia de Lange Syndrome Clinical Trial in Baltimore, MD

Access cutting-edge cornelia de lange syndrome treatment through this clinical trial at a research site in Baltimore. Study-provided care at no cost to qualified participants.

Sponsored by Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

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IRB Approved

This study follows strict safety protocols and ethical guidelines

No-Cost Care

All study-related cornelia de lange syndrome treatment provided free

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Why Participate?

  • No-Cost Study Care

  • Local to Baltimore

    Convenient for MD residents

  • Cutting-Edge Treatment

    Access to innovative therapies

  • Expert Medical Care

    Close monitoring by specialists

  • Possible Compensation*

    For time and travel

*Compensation varies by study. Confirm details with coordinator.

Simple Process

  1. 1Submit this form
  2. 2Phone screening
  3. 3Visit Baltimore site if eligible
  4. 4Begin participation

About This Cornelia de Lange Syndrome Study in Baltimore

The goals of this clinical trial are to identify factors associated with the development of problem behavior in Cornelia de Lange syndrome (CdLS) and to develop an effective behavioral assessment and treatment model for problem behavior in children with CdLS. The hypotheses are as follows: 1. Based on pilot data, the investigators hypothesize that individuals with CdLS will exhibit preferences for auditory stimuli relative to other categories (e.g., visual, tactile) of stimuli. 2. Based on pilot data, the investigators hypothesize that individuals with CdLS will exhibit problem behavior to obtain adult attention or to escape task demands relative to tangible and control conditions, as measured by functional analysis results. 3. Function-based behavioral treatments will reduce problem behavior in individuals with CdLS by 80% or greater relative to baseline rates. 4. Individuals with CdLS and problem behavior will exhibit more impaired communication, demonstrate increased emotion dysregulation, and exhibit more severe symptoms of Autism Spectrum Disorder (ASD) relative to those with CdLS and no problem behavior. Participants in the intervention group (families of children with CdLS and problem behaviors) will be asked to complete study measures and attend 2 full days and one half-day of clinic services at Kennedy Krieger Institute so that the study team can provide assessment and treatment of child problem behaviors, and then train parents to apply the intervention. Participants in the control group (families of children with CdLS and no problem behavior) will be asked to complete study measures once every 3 months for a 2-year period to monitor the children. This study will improve the ability to effectively treat problem behavior is CdLS, as well as identify key variables associated with problem behavior in CdLS which may be examined in future studies and clinical practice to foster early intervention and prevention efforts.

Sponsor: Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

Who Can Participate

Inclusion Criteria

for treatment group:
Child with CdLS and problem behavior:
clinical diagnosis of CdLS confirmed;
age 3 to 15 years;
is English-speaking;
exhibits SIB, aggression, and/or disruptive behavior; and
is able to participate in several hours of assessment/treatment.
Parent of child with CdLS is English-speaking and is willing to:
attend 2 full-day and one half-day clinic visits;
complete and return study measures; and
implement a behavior plan. Inclusion Criteria for control group:
Child with CdLS without problem behavior:
clinical diagnosis of CdLS confirmed;
is English-speaking
age 3 to 15 years; and
child's age and adaptive functioning level matches that of a child in the treatment group
Parent of child with CdLS is English-speaking and willing to:
complete and return study measures.

Exclusion Criteria

for treatment group:
Child with CdLS:
does not exhibit SIB, aggression, or disruptive behavior;
child is younger than 3 years or older than 15 years;
is not English-speaking;
has severe SIB that produces significant tissue damage or requires protective equipment;
has uncontrolled seizures; or
has medical conditions or requires time-intensive medical care that limits attendance or participation.
Parent of child with CdLS is not English-speaking or is not willing to complete study procedures. Exclusion Criteria for the control group:
Child with CdLS:
exhibits SIB, aggression, or disruptive behavior;
is younger than 3 years or older than 15 years;
is not English-speaking;
age and adaptive functioning level do not match that of a child in the treatment group.
Parent of child with CdLS is not English-speaking or willing to complete study procedures.

Not sure if you qualify? Submit your interest and a study coordinator will help determine your eligibility.

Frequently Asked Questions

Q:Is this study available in Baltimore?

Yes, this clinical trial (NCT05829668) has an active research site in Baltimore, MD that is currently enrolling participants.

Q:Is it safe to participate?

Clinical trials follow strict safety guidelines and ethical standards. This study has been reviewed and approved, and participants are closely monitored by medical professionals. You can withdraw at any time.

Q:Will I be compensated?

Many clinical trials offer compensation for your time and travel expenses. Specific compensation details will be discussed during the screening process. All study-related medical care is provided at no cost.

Q:Can I leave the trial if I change my mind?

Absolutely. Participation is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty.

Still have questions? Our study coordinators are here to help.

Cornelia de Lange Syndrome Treatment Options in Baltimore, MD

If you're searching for cornelia de lange syndrome treatment options in Baltimore, MD, this clinical trial (NCT05829668) may be an excellent opportunity. Clinical trials provide access to cutting-edge treatments that aren't yet available to the general public, often at no cost to participants.

Our Baltimore research site is actively enrolling participants for this clinical trial. You'll receive care from experienced cornelia de lange syndrome specialists who are at the forefront of medical research. All study-related care, including examinations, treatments, and monitoring, is provided at no cost to qualified participants.

Looking for more options? Browse all cornelia de lange syndrome clinical trials near you to find additional studies recruiting in your area.

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