Patient Registry
PatientsLikeMe offers both industry and non-profit research partners access to our platform for use as a patient registry. Unlike traditional registries, PatientsLikeMe provides ongoing, open, real-time data access to both patients and researchers in order to conduct research in record time.
The various components of a PatientsLikeMe registry help patients to best describe their disease, improve their outcomes and interact with others in the registry. Our platform captures these interactions in real-time, and the data can be mined for powerful insights.
Registry components include, but are not limited to the following:
Patient-Entered Data
The PatientsLikeMe platform collects longitudinal patient data, including:
- Demographic and clinical data
- Comorbidities and complications
- Symptoms and side effects
- Treatments, including pharmaceuticals and medical devices
- Quality of life measurements
- Disease Management Tools
- Records of hospitalizations and other life events
Patient Matching for Basic Research and Clinical Trials
- Education and support for patients with informational materials on clinical trials
- Matching of researchers with qualified, patients seeking trial participation
- Bi-directional recruitment
- Patient to Project:
- Allows patient to contact PatientsLikeMe Research and Development Team for further information, enrollment opportunities and procedures, etc.
- Researcher to Patient:
- Allows clients to gauge how many potentially relevant patients are on the site and identify potential cohorts
- Bioinformatics/data mining
- Aggregate trend analysis
- Development of specific cohorts for additional longitudinal studies
Drug Safety and Pharmacovigilance
To better understand the impact of medications that treat diseases in the real world, PatientsLikeMe has implemented a drug safety system twice-audited by industry professionals.
- This functionality, added to the platform’s data collection capabilities, provides potential for reliable signal detection to supplement industry and FDA efforts in pharmacovigilance. Other reporting requirements can be completed per the regulatory guidelines and standard operating procedures of our Partners.