PATIENTSLIKEME LAUNCHES GENETICS SEARCH ENGINE FOR ALS PATIENTS
CAMBRIDGE, Mass. — —
PatientsLikeMe, the leading online community for people with life-changing conditions, announces the launch of its Genetics Search Engine for its ALS patient community. Through the PatientsLikeMe platform, patients can now share genetic information and find others like them by the gene (and even the specific mutation in that gene) causing their condition.
“This is the world’s first search engine where patients can share disease-linked genetic information and use it to find other patients like them,” says James Heywood, co-founder and chairman of PatientsLikeMe. “Combined with our outcome, treatment, and symptom information, this represents a patient-centered model for realizing the goals of personalized medicine today.”
A major step toward incorporating genetics into the PatientsLikeMe platform for all diseases, the Genetics Search Engine is designed to allow patients to share additional data on genetic causes of ALS and help the research community learn more about the disease.
“With 64 patients sharing genetic information in the community, we have already begun to see variations in the progression rate by specific mutations,” says Catherine Brownstein, Ph.D., geneticist and researcher at PatientsLikeMe. “Transformative questions about how the disease varies by cause might be able to be answered far quicker than before.”
In February, researchers from the University of Massachusetts (U.S.), King’s College London (U.K.), and the University of Sydney (Australia) identified a new causative gene for ALS, called FUS. The PatientsLikeMe system design allows for any genetic cause to be shared, and has the capability to capture information about very rare or little known gene mutations, such as the newly discovered FUS. Currently, PatientsLikeMe has patients sharing data on the VAPB P56S mutation, as well as 11 various SOD1 mutations including A4V, D90A, and E100G.
Adds Heywood, “Beyond the research implications of what this means today, if you’re a patient with familial ALS, you can now use this information to make better decisions about your healthcare and learn from the experiences of others like you.”
Launched in 2006, the PatientsLikeMe ALS community now has more than 3,400 ALS patients sharing detailed health information (such as symptoms, treatments and outcomes) to chart the real-world course of their disease over time. Through the site, patients and caregivers are finding others just like them, learning more about the condition and making trusted social connections.