Melanoma is a malignant tumor of melanocytes which are found predominantly in skin but also in the bowel and the eye
The Melanoma Molecular Map Project (MMMP) website (http://www.mmmp.org) MMMP is the first open-access, interactive multidatabase dedicated to the translational research on melanoma/cancer (molecules > pathways > targeteddrugs > clinical trials). The aim of this non-profit project is to bring together the scientific community working to defeat melanoma/cancer by means of an online tool designed as a comprehensive and continuously updated databank collecting and organizing the huge and ever growing amount of knowledge on melanoma/cancer currently scattered in thousands of scientific publications. Besides being the first DISEASE-SPECIFIC SYSTEMATIC DATABANK, the MMMP provides both basic researchers and clinicians with an unprecedented tool to: 1) keep updated with melanoma/cancer research advances 2) stimulate new mechanistic hypotheses on melanoma/cancer biology 3) rationally support innovative anticancer therapeutic approaches following the principles of molecularly targeted personalized therapy 4) systematically store the scientific knowledge on cancer/melanoma in a rationally organized/open-access fashion. This project might represent the first opportunity of unifying the efforts of thousands of researchers from around the world so to speed up the pace of discovery of more effective anti-melanoma/cancer therapies. Given the poor life expectancy of many people diagnosed with cancer, hopefully the scientific community will not overlook this opportunity. Best William
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.