Spotlight

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

What We Offer

RESOURCES AND SERVICES:

Recruitment for studies 

  • With an existing database of participants with a wide range of IDD’s, the HCP recruits for investigator initiated studies from the pool of existing participants.  
  • If there is a need for specific population participant recruitment from outside of the database, the HCP can provide recruitment services such as newspaper advertisements, flyers, and online recruitment through list-serves and special interest websites.          

Scheduling 

  • The HCP can coordinate scheduling of participants to fit in with investigator proposed time slots. 

Collection of Biosamples    

  • As a matter of policy the HCP collects biosamples from each willing participant, performs initial processing of the samples, and has them stored in the DNA Isolation and Cell Expansion Facility (DICE).  
  • The HCP is also able to collect and process biosamples for investigator initiated studies. 

Consultation in Study Design 

  • The HCP provides expert consultation on study design with senior investigators.  

IRB protocol submissions 

  • HCP staff are experienced in submitting protocols to the Institutional Review Board (IRB) assisting investigators in: 
    • Setting up protocols that involve human subjects to meet the Research Standards and Protection of Human Subjects as set forth in the Declaration of Helsinki and monitored by the college’s IRB 
    • Developing and assembling IRB applications in appropriate format 
 

ABOUT THE DATABASE:

REDCap Database 

  • The HCP maintains a central database containing over 600 participants, in which new participants are constantly being added. 
  • The database is implemented with REDCap (Research Electronic Data Capture), and has multiple tiers of security. 
  • Maintenance of a central database ensures that the efforts that go into recruitment and characterization of clinical and typically developing participants for research benefit both individual researchers, and the broader IDDRC research community.   
  • The HCP database includes a searchable web-based interface for specific population identification (e.g., Autism, ADHD, High Risk Psychosis, etc.) as well as a number of other variables to delimit the population of interest in a search (e.g., age, sex, age of parents at birth, etc.).  

Access to the Database 

  • IDDRC investigators automatically have access to basic de-identified information in the database, to determine whether or not there may be participants that qualify for their study.  
  • Investigators outside of the IDDRC must go through a request process with the Data Access Committee (DAC) before having access to the de-identified information in the HCP REDCap database. 
  • Following initial query of the database, investigators must go through a formal application process with the DAC for recruitment or data analysis.  
 

DATA SHARING:

Existing Data 

  • The HCP acts as the coordinating hub of the three IDDRC Cores that collect human data, therefore the HCP database will indicate when genetic and imaging data exists for each participant.  
  • The indication of existing data available facilitates the acquisition of pilot data at low or no cost to IDDRC investigators, since existing data can be reanalyzed based on the specifications of an individual project.  

Collaboration 

  • Investigators can learn of relevant projects through this common database and through the ‘Current Projects’ section of our webpage, which enables collaboration among investigators tackling these issues from a variety of complementary approaches.  

  

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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