cystinosis.patientcrossroads.orgCure Cystinosis International Registry - Cystinosis Research Foundation

Donate Imagine what we can do together! Global Patient Registry for Cystinosis – Better Treatments and a Cure Starts with You! The Cystinosis Research Foundation has partnered with CoRDS (Coordination of Rare Diseases at Sanford) to create the only international cystinosis patient registry in the world. CoRDS supports and enables rare disease communities to build robust registries to help accelerate research. Enrolling in the cystinosis patient registry is one of the most effective ways to help support research and advance clinical treatments for those living with cystinosis. You can watch a short video about CoRDS by clicking on the black box below. CCIR is an online, confidential database of standardized information about individuals with cystinosis. By sharing your diagnostic and treatment history, you can help provide researchers with the data necessary to conduct informed research and clinical trials which ultimately will lead to improved treatment options and outcomes for patients. The comprehensive questionnaire contains 135 questions about cystinosis that include questions about diagnosis and treatment, as well as all areas affected by cystinosis including the eyes, kidneys, muscles, bones, and neurological complications. Designing the questionnaire was a collaborative effort by leaders in the cystinosis community including researchers, clinicians, adults with cystinosis, and parents of children with cystinosis. View our CCIR Collaborators. Download the CCIR flyer . Our goal is 100% participation by our international cystinosis community. The sooner we reach our goal, the more useful our data will be for researchers working around the world to find better treatments and a cure for cystinosis. Enrollment Instructions - Getting Started If you would like to enroll yourself or your dependent and complete the CoRDS Patient Registry Questionnaire online, you may do so by following the instructions below. You may also complete registration on paper by calling CoRDS at (877) 658-9192 or sending an email to cords@sanfordhealth.org and requesting a paper version of the CoRDS Patient Registry Questionnaire. Step 1 Set Up A CoRDS Profile LOGIN SETUP Your username will be your email address. You will receive an email with a link to activate your account. Once you click on the link sent to your email, you will be able to create your password and log in to your account. Login Step 2 Complete CoRDS Standard and Disease-Specific Questions Once you log into your account, you click on the Start Questionnaire tab to the left of the screen. the CoRDS questionnaire. The CoRDS questionnaire (see sample at the bottom of the page) collects basic information and will take about 5-10 minutes. Once logged into CoRDS click START QUESTIONNAIRE” near the top of the screen. Throughout the questionnaire, you should click SAVE & NEXT” button in the upper right-hand corner of the screen to proceed to the next set of questions. In order to access the Cystinosis questionnaire you will need to enter cystinosis” as the appropriate diagnosis. Step 3 Complete the Cystinosis Questionaire Once you’have answered all the questions, click SUBMIT and your’ve completed the CoRDS questionnaire! Now you’re ready to move on to questions specific to cystinosis! The questionnaire will take about 45-60 minutes to complete. Please remember that you can save the questionnaire at any point, close out and log back into the registry at a later date (remember to record your username and password) . Remember to click SUBMIT at the end of the questionnaire. Even if you have clicked SUBMIT at the end of the questionnaire, you can go back at any time and update your answers. You should plan to update your questionnaire at least every year and after any significant health changes. On behalf of the Cystinosis Research Foundation, thank you for taking the time to complete the questionnaire and for making an important contribution to cystinosis research! Preview Questionnaires CCIR Questionnaire CoRDS Registry Questionnaire FAQs What is a patient registry? Our registry is a program for collection, storage, retrieval, and dissemination of clearly defined information about cystinosis. Data collected in this registry includes diagnosis and treatment, management of care, quality of life and longitudinal information for cystinosis. Why a cystinosis registry? In one word, PROGRESS . Having a registry specifically for individuals with cystinosis allows approved researchers to have easy access to useful medical data on many individuals with cystinosis. Since we will have already collected this data and obtained your consent to share it, researchers can begin to develop better studies much more quickly, and more easily find participants for these studies. Who should participate? Everyone with cystinosis! Participating in the Registry at CoRDS is a great way for participants to take part in helping to identify the specific causes, symptoms, and treatments of cystinosis. Is personal information safe? Internet polls, questionnaires, and surveys are often used to collect information quickly and easily from respondents. However, to publish their results, researchers must only use information obtained in a specific way. The patient data they use must have written approval from patients to use their data this way and must adhere to strict privacy regulations. The registry is compliant with the European Union General Data Protection Regulation (GDPR). CoRDS has worked hard to ensure that researchers can use the information you provide. CoRDS submits every questionnaire to their Institutional Review Board approval. The IRB is a group that reviews the ethics of medical research studies. Informed consent also safeguards participant data. When registering to participate in CoRDS, participants (or their representatives) are given a chance to read the consent documentation before filling out the questionnaire. For any questions, participants can call CoRDS at + 1 877 658 9192 or send an email to cords@sanfordhealth.org . If researchers receive approval to look at the registry or questionnaire responses, they will be given only the anonymous data without the identifiable information. The Cystinosis Research Foundation can only access your identifiable information if you choose to share it with us when you complete your registry questionnaire. Your privacy is also protected even if you indicate that you are willing to be contacted for additional research. For example, a researcher might contact CoRDS to ask for additional information from all participants who have a specific symptom, such as muscle weakness. CoRDs would then contact every participant in the registry who said that they had muscle weakness and that they would like to participate in additional studies. CoRDS would then provide these people with the researcher’s contact information, and it would be up to the individual participants to contact the researcher to participate in additional research. CoRDS will never provide your contact information to anyone. When should I update registry information? Updates can be done any time and should only take 10-15 minutes. But updates should be done at least every year, after any significant change in the participant’s health, and immediately after their 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. What is the purpose of the registry? Researchers will be able to compare your answers with those of others. The researchers will then be able to detect patterns, identify common symptoms and gain insights into effective and ineffective treatments. Your answers will provide a better overall understanding of cystinosis and how the disease develops/progresses over the course of a lifetime. Our goal is to collect and provide valuable information and to speed up research studies of cystinosis and help start...