Simons Searchlight

RNU4-2 Related Syndrome | RNU4-2 Related Syndrome Gene Guide

Help accelerate research into rare genetic neurodevelopmental disorders! Interest in ReNU Syndrome from pharmaceutical and biotechnology companies is growing. This momentum is incredibly encouraging, but advancing from interest to well-designed studies and potential treatments requires strong, organized patient data. We are asking ReNU families worldwide to help build that foundation by creating your CRID then joining Simons Searchlight.

• How to Enroll

  Create your account at: https://research.simonssearchlight.org/account/create

  Learn more about the process here: https://www.simonssearchlight.org/research/

• Overview

  RENU Syndrome United is partnering with Simons Searchlight to help advance research on RNU4-2-related syndrome (ReNU syndrome).

  Simons Searchlight is an international online research program studying more than 185 rare genetic neurodevelopmental conditions. By joining the program and sharing your experiences through online surveys and optional blood sample collection, families contribute to research that helps scientists better understand these conditions and supports the development of improved care and future treatments.

  Every family's participation makes a difference.

• Location

  Learn more about surveys and samples collection here: https://www.simonssearchlight.org/data-biospecimens/

• Why Participate

  • Contribute to research that could lead to better treatments and support.

  • Receive the latest data summaries for your genetic community as new findings become available.

  • Access individualized reports for certain surveys you complete.

  • Get access to an expert research team and helpful resources and connect with other families who share your diagnosis.

  • Be part of a growing community of families and researchers working together to make a difference.

• Who Can Participate

  To participate in Simons Searchlight, the ReNU family must:

  • Have a confirmed genetic diagnosis of RNU4-2-related syndrome

  • Provide a copy of the genetic lab report

  • Be able to participate in one of the following languages – English, Dutch, French, German, Italian, Portuguese, or Spanish.

• Cost

  Participation is completely free for families and individuals with eligible rare genetic conditions, such as RNU4-2-related syndrome.

• Compensation

  Participants may be eligible to claim survey gift card rewards.

  Review RSU’s Research and Treatment Disclaimer here: https://www.renusyndrome.org/terms-of-service

• Contact Information

  https://www.simonssearchlight.org/about-connect/

• Frequently Asked Questions

  https://www.simonssearchlight.org/frequently-asked-questions/