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

Requesting Access

The DAC consists of representatives from each of the cores that generate data from participants, the ADM core, and Einstein clinical services.

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

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.

Investigators agree to maintain restricted access to data, and to not transfer or share data with any institution or individual that has not been approved access by the HCP.
Investigators are granted access to the database for one year. After one year, research projects must be reapproved for continued access.

DAC Committee Members
Harry Shamoon	-Associate Dean for Clinical and Translational Research -Director, Institute for Clinical and Translational Research -Professor, Dept of Medicine (Endcrinology)
Sophie Molholm	-Director of Human Clinical Phenotyping Core -Associate Professor, Dept of Pediatrics and Neuroscience
John Foxe	-Associate Director of RFK-IDDRC -Director of Research, Childern's Evaluation and Rehabilitation Center -Professor, Depts of Pediatrics and Neuroscience
Craig Branch	-Director, Gruss Magnetic Resonance Research Center, Dept of Radiology -Associate Professor, Dept of Radiology, Dept of Physiology & Biophysics
Robert Marion	-Director, Childern's Evaluation and Rehabilitation Center -Chief, Section of Child Development, Section of Genetics -Professor, Dept of Pediatrics , Dept of Obstetrics & Gynecology and Women's Health
Bernice Morrow	-Director of Division of Translational Genetics and Department of Genetics -Professor- Dept of Genetics , Dept of Obstetrics & Gynecology and Women's Health , Dept of Pediatrics

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

If you would like to participate or enroll your child in research, please call: 718.862.1860 or email: childrensresearchunit@einstein.yu.edu

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