HAVE YOU OR A LOVED ONE SUFFERED FROM SEVERE
COVID-19
If so, the COVID Human Genetic Effort needs your help!
OUR MISSION
Why do some people get very ill from Coronavirus (COVID-19), while others experience little or no symptoms? Rather than luck, we think the answer is in our genes. Our genes are small, yet mighty and can control our immune systems in even the most subtle ways. This may explain why some people seem better equipped than others to fight this new virus.
Our mission is to find out why and how our genes affect our immune system’s fight against Coronavirus. This discovery will allow us to develop new ways to combat this pandemic: through better and faster diagnosis, new treatment drugs, new ways to develop a vaccine, and a better understanding of how this infection works in the body.
To accomplish all of this, we need your help. Urgently.
OUR STORY
We are a group of more than 250 researchers and physicians from nearly every continent in the world. We believe that science functions for the benefit of humanity, now more than ever.
Cumulatively, we have over 2,000 years of hands-on experience in patient care, and in infectious diseases and genetic research. Many have received national and international awards and recognition for groundbreaking and life-saving research.
We cannot solve the Coronavirus pandemic alone. So, we’ve joined forces to investigate the genetic basis of this life-threatening new disease, and to discover with new ways to treat it. We’re bringing our extensive knowledge, resources and networks to this effort.
We are giving this effort all of what we’ve got and we need you too!
WHERE YOU COME IN
We are investigating the genetic material (DNA) of various individuals that have been directly affected by COVID-19. We are conducting studies on previously healthy individuals, children, centenarians, resistors and controls.
From those eligible for any of the studies, we just need some medical history and a blood sample.
*Even if a relative has passed away, their inclusion in the effort could be invaluable. Please do not hesitate to reach out for more information on how to participate on their behalf.
How to participate:
In person: One or two visits to any of our participating centers for a brief interview and blood sample collection.
Remotely: You can participate by phone or video-call, and have your blood collected at a facility near you.
Want to help? Have more questions? Please feel free to contact us. We look forward to hearing from you.
Privacy:
We would like to thank you for your interest in participating in our study and are so grateful for your potential involvement. Please rest assured that all of your personal information will be protected in accordance with the laws of your country and no collection of information or genetic material will take place without your informed consent.
WHO STARTED THIS CONSORTIUM?
Dr. Jean-Laurent Casanova, a pediatrician and immunologist, heads the St. Giles Laboratory of Human Genetics of Infectious Disease at Rockefeller University in New York, NY, USA. His lab aims to understand why some children develop severe infectious diseases after coming into contact with certain pathogens, while most do not. In his pioneering research, Casanova and his colleagues discovered “holes” in the immune systems of otherwise healthy children that make them susceptible to specific, sometimes life-threatening infectious diseases. These “holes” are caused by congenital mutations in a single gene, and are responsible for the susceptibility to certain infections including mycobacterial diseases, herpes simplex virus encephalitis, invasive pneumococcal disease, chronic mucocutaneous candidiasis, or Kaposi sarcoma. The practical implementations of these findings include molecular diagnosis and genetic counseling for the patients and their families as well as the development of targeted therapies aimed at restoring a deficient immune response.
Dr. Helen Su is a clinical immunologist and the Chief of the Human Immunological Diseases Section (HIDS) at the Laboratory of Clinical Immunology and Microbiology at the National Institute of Allergy and Infectious Diseases in Bethesda, MD, USA. Her research group studies patients with a range of poorly characterized, inherited immunodeficiency-immunodysregulation disorders, and has an especial interest in those patients who have recurrent or severe virus infections. Her research goals are not only to improve diagnosis and treatment of these disorders, but also to elucidate molecular mechanisms that normally regulate the immune system, including those involved in antiviral immunity. These goals are being achieved through a multi-faced approach of clinical evaluations, assessments of immune function, biochemical and genetic analyses, and new technologies.
Previously Healthy Place Holder
While most young and otherwise healthy individuals will only experience mild symptoms of COVID-19, in some rare instances, individuals without any pre-existing health factors may suffer from We are seeking young, otherwise healthy individuals that are suffering or have suffered from a severe case of COVID-19.
You or your loved one may be eligible if you/they:
Were admitted to an intensive care unit (ICU) or equivalent facility because of COVID-19 or a related multisystem inflammatory syndrome
Are healthy and without any risk factors, such as HIV+, cardiovascular disease, obstructive lung disease, chronic liver dysfunction, chronic kidney dysfunction, malignancy, previous bone marrow or stem cell transplantation, immunosuppressive treatment, overt obesity or diabetes, etc.
Are 50 years of age or younger
We particularly call for families in which multiple relatives have fallen ill from COVID-19
PIMS-TS/MISC-C Think Tank Place Holder
Children are unlikely to become unwell with SARS-CoV-2. However, since March 2020, there has been an increase in children admitted to hospitals with an unusual illness during this pandemic called pediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS or MIS-C). Most children with PIMS-TS have no active viral infection, but show evidence of having been infected by the novel Coronavirus. Children with PIMS-TS are rare and the reason behind why these children suffer from severe disease whilst most children have very mild illness remains unknown. We plan to carry out genetic investigations in children with PIMS-TS to help us understand why these children get ill.
Your family may be eligible if your child:
AND
Doesn’t have any other possible diagnoses
AND
Has recently tested positive for SARS-CoV-2 infection
Is younger than 21 years and has a fever
Has laboratory evidence of inflammation
Is/has been hospitalized due to clinically severe illness
Has single or multisystem organ involvement
May have experienced/be experiencing some or all of the symptoms of Kawasaki disease
Centenarian Think Tank Place Holder
During the current novel Coronavirus pandemic, nursing home residents have been the hardest hit by the virus. Elderly people are particularly susceptible to severe infections. The higher the age of a person, the higher the chance that the infection is fatal.
People aged 102 years and older (also called centenarians) have been exposed to the Spanish flu pandemic in 1918. Young children were particularly susceptible to this flu. Centenarians have thus survived another pandemic in their childhood. In the media in countries with the highest numbers of Coronavirus infections, a small number of centenarians have been reported that contracted the Coronavirus but suffered from mild symptoms only. Some of these people did not even need to be hospitalized. Consequently, as of 2020, these centenarians have now survived two pandemics.
The survival of these centenarians may not just be luck. We believe that their survival of both pandemics may be a result of their unique genes. Understanding their survival may lead to the development of drugs for severely ill patients. We are recruiting individuals aged 102 years and older with a proven novel Coronavirus infection that were not hospitalized to investigate their genetic material (DNA).
You or your loved one may be eligible if you/they:
Are older than 102 years
Have proven infection
Have experienced minor symptoms and have not been hospitalized
Resistors Think Tank Place Holder
Without protection, everyone infected with the novel Coronavirus will pass the virus to 2-3 others. Infections mostly happen within households, and occur during the first days of the disease. Surprisingly however, some repeatedly exposed individuals are not infected at all.
The resistance of these people to infection may be attributed to more than just luck. We believe that their resistance may be in their genes. Understanding their resistance may hold the promise of developing drugs for severely ill patients. We are recruiting individuals who did not get infected with the novel Coronavirus, despite having been heavily exposed.
You may be eligible if you:
Were exposed by a household contact, preferably a spouse
Were exposed for at least 1 hour a day to a symptomatic index case
Were bed partners with the index case during the first 3 symptomatic days, or were non-bed partners with the index case during the first 5 symptomatic days
Tested negative for SARS-CoV-2 infection 4 weeks after exposure
Controls Think Tank Place Holder
In order to learn why some people get very ill from the novel Coronavirus while others do not get infected at all, we also need the help of people who were infected but experienced only little or even no symptoms. These people are very important controls.
You may be eligible if you:
Tested positive for SARS-CoV-2 infection
Experienced minor symptoms and were not hospitalized