The Dup15q Alliance is excited to announce the launch of a new program designed to help advance research and clinical service for individuals living with Dup15q syndrome!
Linking Angelman and Dup15q Databases for Expanded Research (LADDER) will allow information gathered about individuals with Dup15q Syndrome to be housed in one place, reducing the time families spend completing forms about their loved ones with Dup15q, and maximizing knowledge to help inform interventions and future treatments.
LADDER will bring together information gathered directly from families, the Dup15q and Angelman Syndrome registries, and research studies in to one secure, central database. With your permission, research data collected at your 15q Network clinic visits will also be included. By combining all this information, LADDER will provide a wealth of new information to researchers, clinicians, and families. We are confident LADDER will lead to improved treatment and care for individuals living with a Chromosome 15 condition!
The database will be maintained by the LADDER research team at RTI International, a non-profit research institute dedicated to improving the human condition. The information held in LADDER is private and no information that could identify you or your family is shared with anyone outside of the LADDER team.
We are asking all Dup15q families to join LADDER by following the steps listed below. This should only take 10-15 minutes. When you join LADDER, you agree to share the information you have provided to Dup15q researchers and registries with the database so all of that information will now be in the same place!
Please consider joining LADDER! To do so, follow these steps:
- Click here to register for an account.
- Check your email! You will receive a welcome email with a randomly generated password you can change once you sign in.
- Return to your account page https://laddertotreatment.org/user/account.
- Complete the Enrollment form.
- You are done! Thank you for enrolling in LADDER!