LMSdr is proud to sponsor a new 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 LMS. LMSdr’s own Scientific Advisory members created the LMS questionaire with the help of Dr. Meg Thorburn, an epidemiologist. This registry is provided in partnership by the Coordination of Rare Diseases at Sanford (CoRDS.)
WHAT IS A PATIENT REGISTRY?
A central place for LMS 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 LMS.
Patients can collaborate with researchers to:
- Describe the natural history of disease
- Look for common charateristics
- 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.
SHOULD I ALSO JOIN
SFA’s SARCOMA REGISTRY?
YES! LMSdr’s and Sarcoma Foundation of America’s (SFA) registries compliment each other. The main difference is that when you join SFA’s registry, you give them permission to access your medical records from your doctor. This provides more detailed and accurate data. LMSdr’s registry doesn’t access your records. While LMSdr’s also collects histories, it also serves as resource for researchers to find potential volunteers for their research studies, and helps to offer new trials to patients.