Q&A

What is a patient registry?

Very simply a registry is a collection of standardized information about individuals with Lowe syndrome. According to a publication from the Agency for Healthcare Research and Quality Research, “Experts agree that [patient-powered registries] are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”

Why do we have a Lowe Syndrome (LS) specific patient registry?

Our patient registry contains customized information about Lowe Syndrome that will aid researchers in better understanding Lowe Syndrome specifically. By populating and growing this online database, we can provide researchers with data that is necessary to conduct informed research and clinical trials. We need both to eventually identify improved treatment options and outcomes for patients. Our goal is to provide fast, secure access for researchers to begin developing data informed studies more quickly and more easily, and to qualify participants for patient studies. Additionally, because the data is properly stored and “living”, with proper permission and sufficient data, we can leverage our registry database to provide more focused support for our LS families by sharing data trends across the LS population.

It may be helpful to request one of your care providers to assist you with this process. Most providers who work with our sons are more than willing to help families answer medical questions about their children. In an effort to show our appreciation, the Lowe Syndrome Association will send a formal thank you letter and a $10 Starbucks gift card to one selected provider per LS family as a token of our appreciation for their time in helping you complete the registry. While you may collaborate with multiple providers, please select one for the LSA to formally acknowledge. Letters will be sent after the LS registries are completed. Feel free to send the full name and address of the provider with your request to Caroline Carrillo at LSAadmin14@comcast.net.

Why should I join the Lowe Syndrome Patient Registry community?

Many dedicated researchers are working hard to unlock important information about Lowe Syndrome but there is still much more that needs to be done – and we need your help. By joining our LS community and sharing your experiences, you’re giving researchers access to crucial data that will help them make discoveries. Together, we will advance Lowe Syndrome research. This is a global effort! Our registry will be shared with researchers and other Lowe Syndrome support organizations around the world! The more data we have, the better for researchers and families to understand trends, needed research and treatment options.

I’m new to this, how do I complete the registry?

The patient registry can be completed over multiple sessions and updated at any time, but annually at a minimum. The information provided is completely secure; the user decides who sees the information, how it will be used and if they want to be contacted by researchers.

The patient registry includes two critical components which require completion: the CoRDS registry- which is IRB approved and cannot be edited by the LSA, and the specific LS patient registry – that includes approximately 50 LS specific questions that will aid interested researchers in their efforts. Completing the registry will take some time and likely require caregivers to access current and past medical records.

New registrants simply “Click Here to Enroll”. An activation form will open in a new window.

  • Complete the activation form by answering each question and clicking SUBMIT at the bottom of the page. You will then be directed to the Login Setup screen.
  • Once you have logged into your CoRDS Patient Registry Profile, you are now ready to begin the CoRDS Patient Registry Questionnaire. To do so, click “START QUESTIONNAIRE” near the top of the screen. Throughout the questionnaire, you should click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions.
  • Once you’ve completed the CoRDS questionnaire, you’re ready to move on to questions specific to Lowe Syndrome! Once you’ve answered every question to the best of your knowledge and clicked SUBMIT at the end of the questionnaire, you’ve completed the Lowe Syndrome CoRDS Patient Registry! You can update your answers at any time. Once completed, your answers will be saved so that subsequent updates will take less time.

I have already completed a CoRDS registry- do I need to complete the newly created LS specific patient registry as well?

Yes please! For those who are already enrolled with CoRDS, there is a separate button especially for you- “Click Here to Update”. Simply log in to your account and click the green button that says, “Update Questionnaire”. All questions will be presented. Once completed, your answers will be saved so that subsequent updates will take less time.

What is the deadline for completing the LS patient registry?

We all know that everyone is very busy, but we are asking you to make completing the registry a priority! Our goal is nothing short of 100% participation by our LS community. The sooner we reach this goal- the more robust our data will be for researchers and for families seeking key data facts that span across our LS community.

When should I update my registry?

Updates can be done any time but at least annually, after any significant change in the participant’s medical history, and immediately after the patient’s 18th birthday. If the participant was enrolled in the registry as a minor, their data becomes inaccessible 30 days after their 18th birthday unless and until they are re-enrolled.