Rose F. Kennedy Intellectual and Developmental Disabilities Research Center - Human Clinical Phenotyping (HCP) Core

Information about the HCP for Parents

IDDRC

WHO WE ARE & WHAT WE DO

  • We are a team of clinicians and researchers trained in different areas of developmental research.  
  • We are interested in helping Einstein investigators to study both developmental disabilities and typical development and health issues such as Autism Spectrum Disorder, Attention Deficit, Sensory Processing Disorder and obesity. 
  • We carry out evaluations  to characterize research participants (cognition and language)      
    • This is called “phenotyping”    

All data collected are then entered in our main secured database to be accessed by investigators involved in specific studies.   

 

WHY PARTICIPATE IN RESEARCH

  • Research is necessary to better understand developmental disabilities.  Research also plays an important role in developing more specific and effective treatments.  
  • By participating in our research studies you and your child can help advance the science of child development and may contribute to the wellness of children affected by disorders.   
  • A unique goal of the Human Clinical Phenotyping (HCP) Core is to expand our secured database of fully phenotyped participants of all ages, and developmental levels.  This database will provide researchers of the Einstein community with the necessary tools to carry out their studies more quickly and efficiently.  

By participating in research through the HCP you and your child will contribute to our innovative approach to clinical research and also make a difference in the lives of children with disabilities. 

 

GETTING STARTED

  1. First, we do a phone screening to determine if your child meets criteria for one of our projects.  
  2.  If your child meets these criteria we will schedule a first appointment
    • We make every effort to accommodate your schedule and we offer after-school and weekend visits. 
     
  3. Evaluations may take 2 to 4 visits to our Center (length of visit can vary).  
 

WHEN YOU ARRIVE AT OUR CENTER

  • All of our evaluations are carried out in a child-friendly environment by our experienced staff.  
  • Parents may observe their children during any of the evaluations or procedures in our center.  
  1. Informed consent :  Before the evaluation begins, we will explain in detail the purpose and procedures of the evaluation. We will show you the rooms where your child will be tested and answer any questions you may have.
  2. Evaluation :  Every child who enrolls in the HCP will be administered an evaluation by one of our experienced examiners.
    Our standard testing battery includes :
    1. General Cognitive Functioning (IQ, etc)
    2. Overall, Receptive, and Expressive Language Abilities
    3. Confirmation of Diagnosis (when applicable)  
     
  3.  Parent questionnaires : After the consent process your child will be invited to one of our child-friendly colorful testing rooms and one of our staff members will assist you in filling out questionnaires about your child’s current functioning in different domains (socialization, communication, daily living skills, attention, play etc).

What the RFK-IDDRC Encompasses

  • The IDDRC, one of Einstein’s oldest and most established programs, is one in which basic scientists and clinicians are focused on intellectual and developmental disabilities (IDDs) of children. Its collaborators have a common goal of disease discovery, diagnosis, prevention and treatment. It encompasses:
  • A revitalized administrative program, building new and productive collaborations at Einstein and its affiliated hospitals by uniting basic scientists focused on normal and abnormal brain development and function with clinicians caring for children with IDDs
 

Contact Us

If you would like to participate or enroll your child in research, please call: 718.862.1826 or email: childrensresearchunit@einstein.yu.edu 

If you are seeking clinical services for your child, please call: 718.430.8500  

 
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