LAMsight is a web portal that gives researchers direct and immediate access to the global LAM patient population and enables LAM patients to make contributions to LAM research in a new way with fewer barriers and less delay.
Just imagine if all the LAM patients in the world could report aspects of the physical and lifestyle issues that they experience living with LAM in a safe, private, and anonymous (unless otherwise desired) way. Imagine LAM researchers being able to analyze that information in order to make new connections and identify potential trial candidates. What if researchers were able to find new questions to investigate and see new patterns in the disease that they had previously not seen because they lacked direct access to patients? We think that this type of direct data-driven dialogue between researchers and patients on a global scale will accelerate the search for an effective treatment and cure for LAM. Patients sometimes underestimate the role they can play in creating greater understanding of LAM. By teaching researchers about what is going on with their bodies, patients can help researchers to better understand what LAM is and who patients are as a truly global patient population. LAMsight makes this direct sharing possible.
Patients know their disease best. LAMsight enables patients to teach investigators more about what clinicians and researchers may otherwise overlook as relevant to understanding and treating LAM. Through LAMsight, patients can build a more effective bridge between patients and researchers who otherwise do not have direct access to one another and, in doing so, patients can open up new avenues of research, perhaps help to eliminate misconceptions and address gaps in treatment research. Through what they learn about patients on LAMsight, often based on patients’ own curiosity about the symptoms that LAM clinicians may find less interesting, researchers will be able to ask new questions, learn more about LAM and how LAM affects different patients and different groups of patients differently. From better understanding of how patients live with the LAM and cope with symptoms, researchers can potentially help patients to improve their quality of life and life-chances.
Doesn’t this sharing happen naturally? Many researchers - especially those who are not also clinicians seeing patients, often speak about the difficulty they have finding the most basic information about patients within their own country, much less the global LAM patient population. Researchers have commented that in many cases they have become discouraged from pursuing work on LAM because they lack readily available access to clinical information. They have stated that they are actually quite interested in self-reported anecdotes from larger numbers of patients around the world to further their knowledge.
Currently, more than 26 LAM patient databases store patient information in different forms using different data fields and often inaccessible to patients, researchers and clinicians other than those seeing the patients themselves. LAMsight is the first of its kind centralized index of all LAM patients anywhere in the world across language barriers, organizational and national lines.
Researchers are also concerned about the high costs of doing patient recruitment for formal clinical trials. LAMsight eliminates the some of the guesswork involved in planning clinical trials and enables researchers to find out whether a study is worth doing or whether a particular study design will be feasible to their potential patient participants.
You can make a difference. We need your help getting as many LAM patients as possible registered on LAMsight. The faster we can build the number of patients connecting with researchers and each other on LAMsight, the sooner we will collectively benefit. Let the dialogue begin!
This site was developed through a partnership between the LAM Treatment Alliance, the MIT Media Lab, Dana-Farber Cancer Institute and other partners as a resource for the global LAM community. Development and maintenance of this site is funded by the LAM Treatment Alliance.
LAMsight is a young project, a dynamic work-in-progress. We are still discovering many things about how to develop it into a useful, user-friendly and acceptable site of high value to patients, researchers, clinicians, and loved ones. The site is evolving rapidly but we recognize that it may lack some of the polish of some of the websites that we have grown accustomed to using. We appreciate your patience and your feedback.
Join us in keeping our eye on the prize! The rewards that will come from our collective effort will be worth our investment. Log into and register at LAMsight by clicking here.
If you have questions, feedback or experience problems with LAMsight, please notify the website administrator immediately by sending an email to:firstname.lastname@example.org