JOIN THE PATIENT REGISTRY

Help us bring patients, families and researchers together to gain a

better understanding of Malan syndrome.

If you or a family member have been diagnosed anywhere in the world with Malan syndrome, enroll in the patient registry to make an important contribution to Malan syndrome research. The registry database will enable a systematic collection and analysis of information from individuals with Malan syndrome to help advance the understanding of the condition. 

We are partnering with Sanford CoRDS to create the registry. Sanford CoRDS supports and enables rare disease communities to build robust registries, providing researchers with the information they need to drive research forward. Please click the CoRDS box below to enroll.

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Benjamin Forred, Project Manager of Translational Research at Sanford Health, discussing the importance of patient registries to accelerate research into rare disease.

Registry Highlights

-The participant is assigned a Global Unique Identifier that enables de-identification of the data when shared with approved researchers to protect patient's privacy.

-The de-identified data will be shared only with researchers approved by the Malan Syndrome Foundation and Sanford's Institutional Review Board.

-Importantly, the participant owns his/her personal data and can withdraw from the registry at any time.

-There is no cost to the participant or the families.

-Data collected from the Malan syndrome disease-specific questionnaire will be shared at the Family Conferences.

FAQs

Still have questions about the patient registry? Click on the questions below to reveal answers to frequently asked questions.

What's the purpose of the registry?


By completing 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 non-effective treatments. The data will provide a better overall understanding of Malan syndrome and how the syndrome develops/progesses over the course of a lifetime. Sanford CoRDS' goal is to collect and provide a valuable resource of information and to accelerate patient recruitment into research studies and clinical trials. Data from the registry can help to: -create a strong patient and research community -allow healthcare professionals/researchers to learn about the syndrome -improve quality of care -develop treatments -improve the management of care




Can data be collected worldwide?


Yes, the registry can be accessed all over the world with the link provided on our website. International participation is highly encouraged.




How is my personal information used and protected?


CoRDS has put many safeguards into place to ensure that researchers can use the information you provide. The first step is called Institutional Review Board (IRB) approval. The IRB at Sanford Research reviewed and approved the CoRDS registry questionnaire and will review the disease-specific questionnaire once it is created. Any researchers who want to use information from the registry must first obtain approval from their own institution's IRB and then obtain approval from Sanford IRB. The second step in safeguarding your information is informed consent. As part of the enrollment process, you will be able to read about the registry and then sign a form that indicates you understand what you are doing. If you have any questions, you can call or email Sanford CoRDS before signing the consent form. Thirdly, the information you provide is kept strictly confidential. All information that you share will be de-identified, meaning your name will not appear. Instead, a computer generates an ID number that will be assigned to your information. Your identifiable information will be kept in one database and your questionnaire responses, tagged only with the ID number, will be kept in a separate database. Once researchers are given IRB approval to look at the registry or questionnaire responses, they will be given only the de-identified data.




What is a patient registry?


A registry is an organized online program for collection, storage, retrieval and dissemination of a clearly defined set of data collected on individuals for a specific and specified purpose. Data collected include diagnosis and treatment, management of care, quality of life and longitudinal information about the syndrome.





Enrollment Instructions- Let's get started!

Step 1

Set Up A CoRDS Profile

SCREENING FORM

Complete the CoRDS screening form. Please use a desktop/laptop computer or tablet. *NOTE-When completing the screening form, it is very important to enter ONE of the following: "Malan syndrome", "Malan overgrowth syndrome" or "Sotos syndrome 2". These names are synonymous and all refer to the same diagnosis. After you submit, you will then be directed to the Login Setup screen.

LOGIN SETUP

A username will be generated for you based on your name. You will need to create a password and setup a security question. Once completed, click the login button to login to your CoRDS Patient Registry Profile.

Step 2

Complete CoRDS Standard and Disease-specific Questionnaire

The questionnaire will take about 1 hour to complete. In the Patient Registry Profile, click the CONTINUE ENROLLMENT button near the top of the screen. Click on the SAVE & NEXT button in the upper right-hand corner of the screen to proceed to the next set of questions.

 

Step 3

Submit

 

Once you've answered all of the questions, click SUBMIT and you've completed the questionnaire! Remember, you can always login to update your answers at any time. You should plan to update your questionnaire at least annually and after any significant changes to medical history. 

Thank you for taking the time to complete the questionnaire and for making an important contribution to Malan syndrome research!

DISCLAIMER

The information provided on this website is not intended to be a substitute for professional medical advice. No images on this site may be used without the written consent of the Malan Syndrome Foundation.

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