Currently, the medical and public health communities don't have a good handle on COVID-19, let alone how to define its long-term, chronic phase. "We don't have a huge body of evidence at this point," says Mehta, a researcher at John's Hopkins. Outside of a few small studies from the United Kingdom, most evidence of Long COVID has been reported anecdotally through grassroots efforts like the Body Politic COVID-19 Support Group, Survivor Corps, Patient-Led Research for COVID-19, and Long Haul COVID Fighters. Until recently, there hasn't been many resources devoted to long-haulers. Now, a year into the pandemic, as more individuals continue to struggle with the long-term effects of the disease, the focus is shifting. More research is forthcoming, including a new initiative from the National Institutes of Health and studies at institutions including Johns Hopkins and Mount Sinai focused on their clinic patients.
About The Long-haul Foundation
The COVID19 Long-hauler Research Foundation is a 501 (c)(3) tax-exempt non-profit corporation that is dedicated to helping people recover from the SARS-2 COVID-19 Virus. Governments and the press have focused almost all of their attention on the COVID-19 pandemic and the acute stage of this illness and mortality statistics. However, very little attention has been paid to the very large number of survivors of SARS-2 and the lasting long-term effects that they suffer from.
About SARS-2 COVID-19 Long-haul Disease
According to a study published in the Annals of Clinical and Translational Neurology, even after the acute COVID-19 infection cleared, an overwhelming number of people who contracted the SARS-2 COVID-19 virus report a string of neurological problems including brain fog, fatigue, dizziness, headaches, and numbness and tingling. Another study from the University of Washington that was published in February found that 32.7% of COVID-19 outpatients and 31.3% of hospitalized patients developed long-haul symptoms that included hemorrhages, blood clots, cardiac myopathies, digestive disorders, sleep disturbance, loss of taste and smell, among others. Currently there are over 100 reported Long-haul illnesses.
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Mobile Research Networks for Long-haulers
COV-19 Research Library
The COVID-19 Long-haul Community
The Foundation interfaces with its membership through the use of a mobile social research network. It uses Forums, Groups, Chats, Blogs and COV-19 Surveillance Applications and smart telemetry to maintain communities of those recovering from Long-haul illnesses. We securely collect and manage HIPAA compliant CDISC standardized data and use it to conduct epidemiologic, genomic and clinical research to gain a complete understanding of COV-19 and its long-term effects.
COVID Foundation Research Networks
The Foundation manages a mobile research network that is specifically designed to provides clinicians and scientists with all of the tools necessary for the research of COVID-19 and the management of research and grant administration. Our Research Toolkit Includes:
Research & Grant Submission
The Foundation partners with academic researchers, clinicians and epidemiologists and funds research studies of its own design as well as those submitted and approved through its electronic grant submission platform. In cases where we are pursuiing our own scientific investigation, the Foundation issues Requests for Proposal based on our own protocol study design. We also accept unsolicitied research projects that drug and diagnostic companies and CRO's wish to pursue in partnership with our COVID-19 subject registries and study enrollment clinical data bases.
The Foundation Manages a Global Clinical Research Network
All Foundation research studies and grants management are integrated into a single platform. Clinicians become part of our Professional Long-haul network and are afforded the ability to participate with one another as valued members of our Social Network Community.
Clinical Reports & Analytics
The Foundation's Social Research Network is constantly capturing a wide-variety of data about COVID-19 from our Long-haul volunteers. Detailed medical and social histories and clinical care and outcome data as well as activities of daily living and measures of disability are stored in HIPAA compliant and encrypted databases. Data is entered via mobile device, telemetry or computer keyboard and is CDISC and SDTM standardized for electronic submission.
Grant Writing & Submission
Our clinical research teams are afforded access to deidentified clinical data assembled from our Long-haul volunteers for the design of study protocols and the selection of clinical end-points. From there, they are provided with all of the tools necessary to submit proposals and if chosen manage every step of each experiment through study lock and publication.
Volunteer to Fight COVID-19 Long-haul Disease
The COV19 Long-hauler Foundation, Who Are We?
The COVID19 Long-hauler Research Foundation is a 501 (c)(3) tax-exempt non-profit corporation that is dedicated to helping people recover from the SARS-2 Covid Virus. The Foundation maintains a wide variety of educational, scientific and medical resources to support those long-haul patients who have experienced lasting side-effects. It maintains registries, a robust CDISC & SDTM standardized COVID19 clinical data warehouse and A.I. assisted medical monitoring system for disease, drug and diagnostic research. It also operates specialized Social Networks that link long-haulers together for collaborative COVID19 community support through forums, groups, chats and blogs.