Intellectual & Developmental Disabilities Research Center Contact Registry

Basic Study Information

Purpose:
The University of Rochester's Intellectual & Developmental Disabilities Research Center (IDDRC) is creating a research study contact database for those with intellectual and developmental disabilities (IDDs). This will help keep people with IDDs, and their families, informed about opportunities to join research studies that can impact the way healthcare is provided, improving the health and wellbeing of those with IDDs. When you join this contact database, you may be contacted about future research study opportunities at the University of Rochester. There are a variety of studies that may be offered, and some studies may offer compensation. There is no obligation to participate in any of the future studies for which you are contacted. You can always withdraw from a research study at any time without penalty. If you have an IDD diagnosis, you can sign up to be a part of this database (it’s okay for a legal guardian to help with the sign-up if needed). Qualifying diagnoses include, but are not limited to, autism spectrum disorders, developmental delay, intellectual disability, Down syndrome, fetal alcohol spectrum disorder, cerebral palsy, MECP2 mutation (e.g., Rett Syndrome), Batten disease and Angelman syndrome, as well as epilepsy/seizure conditions, tuberous sclerosis and movement disorders with a corresponding IDD.

Lead Researcher (Principal Investigator)

Lead Researcher:  Alexander Paciorkowski

Study Contact Information

Additional Study Details

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