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

Requesting Access

Data Access Committee (DAC)
  • The DAC consists of representatives from each of the cores that generate data from participants, the ADM core, and Einstein clinical services.
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  • When requesting access to data, investigators will submit a form that includes information about the investigator, purpose of use, a description of the research, and demonstration of Einstein IRB approval for the project is submitted for review by the HCP Data Access Committee (DAC).
  • Decisions are made by the committee on a case-by-case basis

 

Conditions of Access
  • Prior to database access approval, investigators agree to acknowledge the contribution of data obtained from the HCP database in any publications, written presentations, or disclosures.
  • In the case of collaborative involvement of the HCP in a research project, investigators are expected to recognize the HCP accordingly.
  • Investigators also agree to allow the HCP to post summaries of research projects in the ‘Current Projects’ tab on the HCP website, including the investigator’s name, institution, and links to publications.
  • Investigators must also agree that data will not be used in any research that is not disclosed to the HCP.
  • Any changes to a research project such as the appointment of another Principal Investigator or institution change will be reported immediately to the HCP before continuing use of data.

 

Database Utilization

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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