A dataset dating back to 2005, containing contributions from amyotrophic lateral sclerosis patients will be added to the Pooled Resource Open-Access ALS Clinical Trials, or PRO-ACT database at Massachusetts General Hospital.

The database, part of MGH's Neurological Clinical Research Institute, contains anonymized data from 29 clinical trials and 11,685 patient records. 

ALS is a progressive motor neuron degenerative disease, and only about 25% of patients survive for more than five years after diagnosis, according to an announcement made Wednesday, during ALS Awareness Month.

The disease is a big part of the founding story of Cambridge, Massachusetts-based PatientsLikeMe, said Chris Renfro-Wallace, PLM's chief operating officer. The company is contributing the de-identified data to PRO-ACT in order to accelerate efforts to find a cure.

"We know that partnering with the scientific leaders at MGH is the best way to honor the trust that patients put in us to ensure their data is used for good," said Renfro-Wallace in a statement.

PLM, an open-participation research platform, was established to help patients monitor their health and improve their outcomes. It's also meant to assist researchers in their efforts to develop better health outcome measures that reflect patient experiences with a disease.

"As a consequence of the severity and rarity of ALS, advocacy and patient support groups, like PLM, serve as valuable resources for patients throughout their disease journey, as well as repositories for research data," added Alex Sherman, director of the Center for Innovation and Biomedical Informatics at the NCRI and a principal associate in neurology at Harvard Medical School.

According to leaders at IQVIA, an analytics and connected intelligence company Healthcare IT News reached out to last year for a story on data's role in health equity, patient-generated data sources are a game-changer because they can provide a holistic view of patient care journeys. 

PLM's de-identified patient data will be hosted and maintained by the NCRI and available by request on CIB's website.

Andrea Fox is senior editor of Healthcare IT News.
Email: afox@himss.org
Healthcare IT News is a HIMSS Media publication.