(April 25, 2022) - Riaan Research Initiative, in partnership with Sanford CoRDS, is pleased to announce the launch of the Cockayne Syndrome Worldwide Patient Registry!
Our goal is to have 100 Cockayne Syndrome families join the registry. The information you provide will be critical to advancing scientific research, available to researchers around the world, and helpful to developing treatments. We thank you for your help.
To complete the patient registry questionnaire, follow the instructions below and also check out riaanresearch.org/registry/ for more details. The registry is open to parents and caregivers of living and deceased adults and children diagnosed with Cockayne Syndrome.
1.) Start here with the Activation form. For specific instructions about the registry, including filling out for multiple children, and information about privacy, please visit our website at riaanresearch.org/registry/). Note, if you already have a Sanford CoRDS Research participant username and password, do not fill out another activation form. Just log into your account here, click Update Questionnaire, and you will be directed to the Riaan Research Initiative Cockayne Syndrome questionnaire. You do not need to fill out any of the preliminary questions again.
2.) The child or adult diagnosed with Cockayne Syndrome is referred to as a participant in this survey.
3.) There are 42 pages to complete. Don't be overwhelmed! They go by quickly, and you don't have to complete them all at once although we recommend completing it in one setting if possible (we know you get busy!).
4.) The first 11 pages are standard questions that Sanford asks of every participant no matter their rare disease. We ask you to complete these to the best of your ability. Some of these may be similar to later questions, and we apologize for that.
5.) The Cockayne Syndrome questionnaire created by Riaan Research Initiative and Sanford CoRDs begins on page 12. We ask you to complete these questions in their entirety as best as you can. These questions are intentionally specific to our children's disease and were developed in consultation with CS clinicians, parents, researchers, and data scientists to demystify our patient population and advance CS scientific research. There are also questions about caregiver strain, and the impact having a child with CS has on you. Riaan Research Initiative also plans to publicly share de-identified data with the CS patient community to educate ourselves and better understand the disease. We want you to know as much as the scientists and experts know! Many of the questions involve picking a choice, and should go by quickly.
6.) For any questions, please contact us at info@riaanresearch.org. We are happy to help!
7.) If you've completed the questionnaire, drop us a message and let us know! Contact us on any of our social media accounts or email us at info@riaanresearch.org.
*Finally, the registry is available in different languages.