We Call for Open Anonymized Medical Data on COVID-19 and Aging-Related Risk Factors

Joint initiative by “Open Longevity”, the International Longevity Alliance and scientists, experts and activists around the the world hereby calls on WHO and the Country Leaders for maximum openness of medical data from patients with the coronavirus SARS-CoV-2, to enhance medical research and the development of new therapies and treatment regimens against this world-threatening disease. Especially, we demand more research and development to therapeutically address aging as the main contributing factor for disability and deaths in this disease, for example to improve the immunity in older people. Data openness is necessary to facilitate such research and achieve safe, effective and accessible therapies, as soon as possible, to combat COVID-19 and other diseases that have aging as the main risk factor.

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https://www.change.org/call-for-open-medical-data-on-covid-19

Dear Dr. Tedros Adhanom Ghebreyesus,
Dear Country Leaders,

We hereby call for maximum openness of medical data from patients with the coronavirus SARS-CoV-2, in order to facilitate medical research and the development of new therapies and treatment regimens.

We are grateful to the World Health Organization for its efforts in organizing counter-epidemic measures. At the same time, the COVID-19 pandemic exposed significant problems in the organization of medical research and knowledge all over the globe.

One of these issues is a greater need for research on age-mediated immune deficiency as a major mortality risk factor. It is established that elders have a much greater risk of dying from COVID-19 than young people. The fragility of old people could not explain this phenomenon, as for young children the death risk is very low. While the average mortality rate from COVID-19 among known cases in Hubei, China, was 2.3%, it was 14.8% among people over 80 y.o. COVID-19 is thus a disease opportunistically associated with aging.

The increased COVID-19 mortality rate with age raises questions about what characteristics of biological aging lead to greater susceptibility to this and other infectious diseases. This may be due to the deterioration of the immune system in older ages, certain age-related epigenetic changes, decreased regenerative capacity, etc. Perhaps if there were ways to strengthen or regenerate the immunity of older people, this disease would not kill them. At the same time, there are examples of recovered patients at the age of 100 who may have had beneficial patterns of aging.

Open medical data will allow us to explore the underlying biology of susceptibility or resilience to the pathogens. For example, it is important to explore interconnections between the expression of the angiotensin-converting enzyme 2 (ACE2) gene (which is used as a receptor by the virus), the age of the patients and the outcomes of COVID-19, especially since popular antihypertensive drugs act on the closely related protein ACE as a target.

A thorough analysis of the characteristics of COVID-19 patients is needed to understand the underlying causes of severe COVID-19 impact, for older patients in particular. This includes information on patient’s medical history, medications, vaccination, biomarkers, genomic and transcriptomic data, immune system biomarkers, CMV status, frailty assessment, and omics data on viral response.

We need to globally organize open access to biomarkers and multi-omics data on older COVID-19 victims and survivors. WHO and the Member States should make the existing anonymized databases at their disposal truly open and accessible to researchers.

Published research reveals plenty of epidemiological and virological data, including structural features of the viral capsid, its genome, as well as disease symptoms and mortality patterns, including patient age. There are, however, remaining important research opportunities. Scientific teams and laboratories worldwide could make critical discoveries if they had more data and additional information about COVID-19.

We urge the World Health Organization and countries affected by the COVID-19 pandemic to jointly organize collection and open publication of unprocessed (raw) anonymous data about the people infected with COVID-19, including ill, deceased and recovered. Publication of initial raw data can connect hundreds of scientific groups working in different research areas, because the answers can lie in completely different areas of medicine and biology.

The COVID-19 epidemic is growing daily, and it is not possible to predict its scale. Ineffective patient data management may cost many lives. Urgent action is needed on the part of the WHO, in collaboration with national authorities, especially in the countries with a high number of cases.

This open medical data initiative can yield results crucial not only for combating COVID-19, but also for the prevention of other infectious diseases, especially among elders.

COVID-19 is not the first serious coronavirus epidemic, and likely not the last pandemic in human history. Anti-epidemic measures alone are not sufficient to save the lives of older people who need therapy and prevention, and to fight against such epidemics. Additional efforts are required to develop new therapies and new anti-infectious and supportive medical approaches to improve the immune response.

Copies of this letter were sent to the WHO, as well as country leaders. We will report their replies on the website http://eng.openlongevity.org/, where this document is also available for signing.

We call for the enhancement of medical research, with massive collection and maximum transparency of medical data, regarding patients with the SARS-CoV-2 coronavirus. We call for your support of this initiative.

Yours sincerelly, 

Mikhail Batin, on behalf of Open Longevity Community and Science for Life Extension Foundation (Russia)

Timofey Glinin, PhD, on behalf of Open Longevity Community and Science for Life Extension Foundation (Russia)

Anastasia Egorova, on behalf of Open Longevity Community and Science for Life Extension Foundation (Russia)

Ilia Stambler, PhD, on behalf of Israeli Longevity Alliance (Israel) and International Longevity Alliance

Edouard Debonneuil, PhD, on behalf of Longévité & Santé (France) and International Longevity Alliance

Alexander Tietz-Latza, on behalf of the Healthy Life Extension Society (Europe, Brussels)

Didier Coeurnelle, on behalf of Technoprog (France) and International Longevity Alliance

Walter Crompton, Executive Director, the American Longevity Alliance (USA)

Daria Khaltourina, PhD, on behalf of Council for Public Health and the Problems of Demography (Russia) and International Longevity Alliance

Anton Kulaga, on behalf of the International Longevity Alliance

Robi Tacutu, PhD, Systems Biology Group of Aging, Dept. of Bioinformatics and Structural Biochemistry, Institute of Biochemistry, Romanian Academy (Romania)

Robert J. Shmookler Reis, D.Phil., Dept. of Geriatrics, University of Arkansas for Medical Sciences, Little Rock AR (USA)

Maria Entraigues Abramson, International Longevity Alliance (USA)

Antti Peltonen, MSc, on behalf of the Finnish Longevity Alliance (Finland)

Martin Lipovšek, on behalf of the Slovenian Society for vital life extension (Slovenia)

Peter Engelhardt, PhD, Adjunct Professor of Molecular Genetics, Aalto University (Finland)

Akinloye Josiah, MSc, on behalf of the International Longevity Alliance (Nigeria)

Joao Pedro de Magalhaes, PhD, Professor at Institute of Ageing and Chronic Disease, University of Liverpool (UK)

Aubrey de Grey, Ph.D., Chief Science Officer, SENS Research Foundation (USA)

Georg Füllen, Prof. Dr. (head), Institute for Biostatistics and Informatics in Medicine and Ageing Research (Rostock, Germany)