Northwell Health

Clinical Health Survey

Enroll

The Clinical Health Survey is led by Dr. Ian Krantz, Kelsey Crocker, and Asbaa Khan with the support and expertise of ReNU Syndrome United board members and advisors.

• How to Enroll

  1. Email the research team (available Monday-Friday, 9am-5pm ET to answer questions) at NGHI@northwell.edu

  2. Receive electronic consent form; sign & return, receive survey link

  3. Survey takes ~45 minutes to complete. Questions focus on pregnancy history, genetic testing, medical history (including a brief review of each body system), and family history.

• Overview

  Goal: Perform a cross-sectional study by collecting and analyzing information on the spectrum of features that individuals with ReNU syndrome experience and how these features change or progress over time. Understanding the spectrum of symptoms and their progression empowers providers and guardians to provide optimal care.

• Location

  The survey is online and can be accessed after signing the electronic consent form.

• Why Participate

  This study will enhance clinicians’ understanding of this novel diagnosis, improving recognition of the characteristic features of ReNU syndrome across different specialties.

  Furthermore, it will contribute valuable data to researchers investigating and developing treatments for this condition.

• Who Can Participate

  Legal parent/guardians of an individual with ReNU syndrome are eligible to take the survey.

• Cost

  There is no cost to participate in the survey.

• Contact Information

  NGHI@northwell.edu

• Frequently Asked Questions

  Contact NGHI@northwell.edu with any questions.