Leiomyosarcoma Patient Registry

Leiomyosarcoma Support & Research Foundation is proud to sponsor a new LMS Patient Registry – just for leiomyosarcoma patients worldwide. We encourage patients to “donate their data” into this registry so that researchers can find potential clinical trial participants as well as collect the histories and information to learn more about leiomyosarcoma. Our own Scientific Advisory members created the leiomyosarcoma questionnaire with the help of Dr. Meg Thorburn, an epidemiologist. Newly diagnosed with LMS? Call us for help navigating this new journey. Caregivers are encouraged to call us too! 1-866-912-2730

WHAT IS A LMS PATIENT REGISTRY?

A central place for Leiomyosarcoma patient donated histories that researchers can use. All patient data is de-identified and anonymous. Hospitals do not share patient data with other institutions. Our registry can offer patient data from every where, no matter which hospital they are getting treatment from. The more we have, the better researchers can understand Leiomyosarcoma (LMS). This registry is provided in partnership by the Coordination of Rare Diseases at Sanford (CoRDS).

WHY PARTICIPATE?

Patients can collaborate with researchers to:

  • Describe the natural history of disease
  • Look for common characteristics
  • Determine clinical effectiveness of treatments
  • Locate potential volunteers for studies and trials

WHO IS CORDS?

Coordination of Rare Diseases at Sanford (CoRDS) Is based at Sanford Research, a not-for-profit research institution. CoRDS is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and free for researchers to access.

WHO CAN ACCESS THE DATA?

Researchers must have approval from their own Institution Review Board (IRB) and then approval by CoRDS’s own IRB Scientific Advisory Board. LMSDR’s Scientific Advisory Board may also, if desired, use their discretion to allow or deny access, once the first review requirements are met.

HOW IS MY IDENTITY PROTECTED?

Your information will be de-identified by CoRDS. If you are eligible for a research study or trial, only CoRDS will contact you. They will also contact you annually to update your data.

P.O. BOX

Post Office Box 52697, Tulsa, Oklahoma 74152

Support Group

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LEIOMYOSARCOMA: What You Need to Know

Remember or honor a loved one’s legacy by setting up a dedication page and requesting that donations be made in their honor or memory to help find a cure for sarcoma.