A dataset dating from 2005, containing contributions from amyotrophic lateral sclerosis patients will be added to the General Resource Open Access ALS Clinical Trial, or the PRO-ACT database at General Hospital faculty of Massachusetts.
The database, part of MGH’s Institute for Clinical Neurology, contains anonymized data from 29 clinical trials and 11,685 patient records.
ALS is a progressive degenerative motor neuron disease, and only about 25% of patients survive more than 5 years after diagnosis, according to an announcement made Wednesday, during ALS Awareness Month.
This disease is an important part of the founding story of Patient LikeMe is based in Cambridge, Massachusetts, Chris Renfro-Wallace, chief executive officer of PLM said. The company is contributing unidentified data to PRO-ACT 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 patients place in us to ensure their data is protected,” Renfro-Wallace said in a statement. used for good purposes”.
PLM, an open participatory research platform, was established to help patients monitor their health and improve their outcomes. It is also intended to assist researchers in their efforts to develop measures of health outcomes that better reflect a patient’s experience with a disease.
Center director Alex Sherman adds: “Due to the severity and rarity of ALS, patient advocacy and support groups, such as PLM, serve as a valuable resource for patients throughout. their disease journey, as well as the archive of research data.” Innovation and Biomedical Informatics at NCRI and a principal associate in neurology at Harvard Medical School.
According to the leaders at IQVIA, a connected intelligence and analytics company Healthcare IT News contacted last year to tell a story about the role of data in health equity, patient-generated data sources are game changers as they can provide a overview of the patient care journey.
PLM identified patient data will be stored and maintained by NCRI and available upon request on the CIB website.
Andrea Fox is the senior editor of Healthcare IT News.
Email: [email protected]
Healthcare IT News is a publication of HIMSS Media.
