American not-for-profit association conducts a clinical trial of Comparison of ME/CFS and Long COVID-19 Patients

The Solve ME/CFS Initiative is conducting the clinical trial Comparison of ME/CFS and Long COVID-19 Patients.

The You + ME Registry and Biobank is a collection of patient-reported data and biological samples (eg blood) from people living with Myalgic Encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS), people with long-COVID and control volunteers. This registry will help to provide important data for future research studies and lay the groundwork for a linked biobank.

After signing up, participants complete a series of surveys on their computer including medical history, co-occurring conditions, symptoms, medication, and quality of life. Once this information has been entered, participants will receive a link to download a mobile app to record symptoms, factors, and activity on an ongoing basis. The Registry will also be linked to a biobank which is a place that stores tissues, blood or other samples from participants. The combination of patient-reported data and biological samples will be made available to researchers to help uncover disease causes and identify possible treatments.

Registry data is stored in a secure, encrypted database. Data is anonymized before being made available on a secure platform for research. Biosamples collected from participants are labeled with a coded number to protect their privacy and confidentiality.

It is planned to include 1500 participants.

Actual study start date is January 1, 2020. The researchers expect to complete the study by January 1, 2022.

The inclusion parameters are:

  • Patients with ME/CFS
  • Those without ME/CFS
  • Patients with long-COVID
  • Patients with COVID who recovered

The Solve ME/CFS Initiative (SMCI) - formerly Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Association of America - is an American not-for-profit association dedicated to ending Myalgic Encephalomyelitis and Chronic fatigue syndrome (ME/CFS). SMCI was founded in 1987 and changed its name in the spring of 2014.

The location of the study is as follows (further details can be found here https://ichgcp.net/clinical-trials-registry/NCT04806620) Los Angeles, United States.

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