aHUS & COVID-19: a Resource Page

 

The aHUS Alliance has created this page of resources as an initial place for the atypical HUS community to learn more about issues surrounding this rare disease during the COVID-19 pandemic.  Information about the coronavirus is fast-paced and ever-evolving, and which would make resource lists such as this incomplete, and in need of updated information, from the very moment ours was created (30 March 2020) to highlight topics of high interest in the aHUS global community.

We caution that new information about the coronavirus is learned on an almost hourly basis, so aHUS patients and family caregivers are strongly advised to regularly visit their national government’s outlets for health updates, COVID-19 guidelines, and details related to infectious disease spread in their regions.

Heath care policy, resource allocation, treatment options, drug access, and medical care situations vary widely around the world for those living with aHUS.  Given that, and the varied clinical profiles of aHUS patients, it would be almost impossible that any one particular medical protocol would be advised for those aHUS patients battling the coronavirus.

Some nations with aHUS/TMA study centres have released information specifically for this rare disease, and there are medical associations which have offered targeted information of high interest to include kidney transplants or dialysis.  COVID-19 information will evolve over time, which should bring new knowledge and necessitate frequent updates as the situation unfolds.

Updates are clearly marked.  Scroll to the latest section of new additions, as indicated below:

 

Updates for MAY 2020

 

Specific to atypical HUS

 

8 May 2020

ARTICLE:  Reflections on aHUS During a Global Pandemic

 

6 May 2020

ARTICLE:  Thrombotic Microangiopathy & Precision Medicine (What’s to be learned from the Pandemic?)

 

 

Other Covid-19 Info of interest to the aHUS community

27 May 2020

BAPN:  Updated shielding guidance for children with kidney disease, on dialysis, and immunosuppression (including kidney transplants)

New Guidelines for COVID-19 regarding children in the UK, from the British Association for Paediatric Nephrology.  (aHUS can drastically affect kidney function, causing patients to need dialysis or transplant.)

 

Multi-System Inflammatory Disease (MISC-C)

 

20 May 2020

News Media USA, Article on MIS-C  (NY Times, not a Research/Medical Source)  Young adults are also affected by Kawasaki-like disease linked to coronavirus, doctors say

 

 

14 May 2020

CDC (USA Center for Disease Control):  For Parents: Multisystem Inflammatory Syndrome in Children (MIS-C) associated with COVID-19

 

 

 

 

Updated: 27 April 2020

COVID-19 and Dialysis

 

Article  COVID-19: Challenges faced by Dialysis Patients

 

 

 

A Glimpse into Coronavirus History

SARS-CoV-2:  A Perspective

 

The 1918 influenza pandemic (sometimes called the ‘Spanish Flu’) established the first widespread use of plasma from recovering patients, known as ‘convalescent plasma’ or CBP, which was also adopted for the treatment during the Ebola outbreak in 2013 (see JAMA article).  In 2003 the SARS (Severe Acute Respiratory Syndrome or SARS-CoV) outbreak affected an estimated 26 nations, and launched study into coronaviruses as well as into possible vaccines (source: WHO).

COVID-19 like SARS or MERS is a disease caused by a form of coronavirus, a previously unknown virus known as SARS-CoV-2 which causes the disease COVID-19 (“Co” refers to corona, “vi” to virus, “d” to disease, and “19” for 2019). Reports from the frontlines of the COVID-19 outbreak note utilization of convalescent plasma, or an infusion of plasma from people previously recovered and containing antibodies against this coronavirus, as a potential therapeutic for patients seriously ill with COVID-19.  As information and research unfold, and evidence-backed data rolls in, new therapeutic options and socio-economic impact will continue to have global focus now and for future generations.

 

 

 

 

Updated:  17 April 2020

COVID-19 Info & Resources

 

 

17 April 2020 – It’s a difficult task to keep track of COVID-19 news & research, especially since it’s a continually evolving situation. Here’s a selection of info (research & articles) that may be of particular interest to people interested in atypical HUS. Scroll to the end of these aHUS Alliance COVID-19 updates for resources specifically related to atypical HUS.

 

Mental Heath:  Issues & Resources

Mental Health & COVID-19 – aHUS Alliance Resource Page (Article)

 

 

 

COVID-19 & Complement

Note: The complement system is a part of the body’s immune system that enhances (complements) our ability to prevent or defend against infections.

 

Coronaviruses hijack the complement system  (Article by Wilk, CM, 14 Apr 2020)

Background for our Readers:  CM-TMA article 

Complement-mediated TMA Awareness – Did you know it was aHUS?

 

Complement associated microvascular injury and thrombosis in the pathogenesis of severe COVID-19 infection: A report of five cases  (Magro et al, 15 Apr 2020)

 

 

Specific Drugs & Treatments in the News

 

During the 24 March 2020 webinar for FAQs about atypical HUS & COVID-19, Dr. Marie Scully (UK) noted that there were an estimated 300 drugs of interest as potential therapeutics under study. New information appears almost hourly, so your review of updated information is critical. 

 

 

Overviews

Here’s What We Know about the Most Touted Drugs Tested for COVID-19 (16 Apr 2020, Scientific American)

Drug Evaluation during the Covid-19 Pandemic (14 Apr 2020, NEJM)

 

 

Clinical Trials for COVID-19

Note: Use the ‘official’ names for research & clinical trials related to the coronavirus:  SARS-CoV-2 and 2019-nCoV

COVID-19 Clinical Trials listed on Clinical Trials.gov – List of 657 Studies

657 Studies as of 17 April 2020

 

Mentioned in the Media

COVID-19 Convalescent Plasma Therapy (use of plasma antibodies from people already recovered from coronavirus) Convalescent Plasma: What is it?

Convalescent plasma: Possible treatment for COVID-19?  (10 Apr 2020, Mayo Clinic)

COVID-19 and Convalescent Plasma: Frequently Asked Questions (10 Apr 2020, ASH)

 

Remdesivir  (antiviral, originally developed by Gilead Sciences to treat Ebola & Marburg virus diseases)

Gilead & COVID-19 Clinical Trials

NEW Info & Data from Gilead Sciences CEO: 29 April 2020

 

Hydroxychloroquine (not to be confused with chloroquine) was originally developed to prevent & treat malaria, but is currently used for rheumatoid arthritis, lupus, and other conditions.

Now studied for COVID-19, and considered in a combination of hydroxychloroquine & azithromycin.

NIH Study (USA)

 

Icatibant

NL: Researchers at the Radboud UMC look at Bradykinin as a mechanism for COVID-19 blood leakage to impact lung function, and explore use of Icatibant to inhibit bradykinin, in the EU for HAE.

Article regarding impact of this research

Research –   Kinins and Cytokines in COVID-19: A Comprehensive Pathophysiological Approach (3 Apr 2020)

 

Many others under consideration so check:  COVID-19 Clinical Trials listed on Clinical Trials.gov 657 Studies as of 17 April 2020

 

 

Vaccines Against COVID-19

Of the many companies and academic institutions with a COVID-19 vaccine in development, 5 are currently testing their vaccine candidates in humans. Moderna was the first of these to begin human trials on 16 March.

On 17 April 2020, 47 studies for COVID-19 vaccines were found on ClinicalTrials.gov using these search terms: SARS-CoV-2, Vaccination, and Immunization

 

Public statement for collaboration on COVID-19 vaccine development (13 Apr 2020, WHO)

Coronavirus vaccine: when will we have one?  (15 Apr 2020, The Guardian)

Moderna Ships mRNA Vaccine Against Novel Coronavirus (mRNA-1273) for Phase 1 Study (24 Feb 2020, via Moderna)

INOVIO Initiates Phase 1 Clinical Trial Of Its COVID-19 Vaccine and Plans First Dose Today (6 Apr 2020, via INOVIO)

Novavax Identifies Coronavirus Vaccine Candidate; Accelerates Initiation of First-in-Human Trial to Mid-May (via Novavax)

Sanofi & GSK to join forces in unprecedented vaccine collaboration to fight COVID-19 ( 14 Apr 2020, via GSK)

 

 

Atypical HUS & COVID-19

Scroll Down for Details & Original Posts

 

UK – National aHUS Service  (Home Page: “Important info about COVID-19”)

NL – CUREiHUS  (Guidelines: Original in Dutch or Translate into preferred language.)

aHUS & COVID-19 – Webinar (Video & Transcript: FAQ w/ patients, the Global aHUS Registry)

 

 

 

aHUS Alliance:  Articles on COVID-19

 

8 March 2020  aHUS Trials Watch 10  Toronto Complement Conference, NCT04288713, and COVID-19

14 Mar 2020  They “Get It’ When they can Get It  Parallels among COVID-19 & Rare Diseases

18 Mar 2020  aHUS and COVID-19  Conversations and Insights

 

Not Familiar with the rare disease Atypical HUS?

Visit the aHUS Info Centre

 

 

Continue to SCROLL DOWN to View

Resource Posted Prior to Our Updates (Above)

 

Note: The aHUS Alliance does not provide medical advice nor promote or suggest medical treatment or care.  Information and resources here portray a small selection of what is available to medical professionals, and is no substitute for the advice given to patients by their own physicians.  Should you suspect exposure to COVID-19, contact your doctor and local healthcare services for updated directives.

 

 

Start Learning: Atypical HUS & COVID-19

 

aHUS Alliance – Articles

 

8 March 2020  aHUS Trials Watch 10  Toronto Complement Conference, NCT04288713, and COVID-19

14 Mar 2020  They “Get It’ When they can Get It  Parallels among COVID-19 & Rare Diseases

18 Mar 2020  aHUS and COVID-19  Conversations and Insights

 

Not Familiar with the rare disease Atypical HUS?

Visit the aHUS Info Centre

 

 

 

 

24 March 2020 Webinar:  Atypical HUS & COVIDー19

 

 

A panel of 6 aHUS experts from the Scientific Advisory Board (SAB) of the global aHUS registry shared info and answered questions from patients and aHUS family caregivers regarding the effects of coronavirus on those diagnosed with this very rare disease.

We are extremely grateful for the physicians who shared their time and expertise as webinar presenters during their pressing professional duties during the COVID-19 outbreak:  Gema Ariceta, MD, Spain (pediatric nephrologist), David Cohen, MD, USA (adult nephrologist), Eric Rondeau, MD, France (adult nephrologist), Marie Scully, MD, United Kingdom (hematologist), and panel moderator Christoph Licht, MD, Canada (pediatric nephrologist).

Over 300 people attended the webinar in real time, and now we are pleased to announce that archived video from this 24 March 2020 ‘aHUS & COVID-19’ webinar has become available.  Our thanks to Alexion for providing the IT support for the webinar.

Click to read the ARTICLE describing the Webinar

Click the Webinar Image Below to WATCH the Video

Click to download Transcript (pdf) aHUS & COVID19, Webinar Transcript 24 Mar 2020 Courtesy of the Global HUS Registry SAB (permission granted by Dr C Licht)

 

 

Guidelines from aHUS centres of Expertise & Research

 

UK   National aHUS Service  (In affiliation with the NHS, National Renal Complement Therapeutics Centre & Newcastle Hospitals).

Posted on their website’s Home Page, which indicated regular information updates

http://www.atypicalhus.co.uk/

 

NL    CUREiHUS  (In affiliation with the Dutch Radboudumc Expertise Center Rare Kidney Diseases, CUREiHUS is a national study for to determine optimal treatment for aHUS)

 http://cureihus.nl/nieuws/covid-19-coronavirus-en-ahus/ 

 

 

 

 Atypical HUS in Critical Care Settings:  Medical Publications

 

Azoulay et al (2017)  Expert Statements on the Standard of Care in Critically Ill Adult Patients With Atypical Hemolytic Uremic Syndrome

 

Manrique-Caballero et al (2020)  Typical and Atypical Hemolytic Uremic Syndrome in the Critically Ill 

 

Rivera et al (2018)  Impact of a multidisciplinary team for the management of thrombotic microangiopathy

 

Vincent et al (2018)  Thrombocytopenia in the ICU: disseminated intravascular coagulation and thrombotic microangiopathies—what intensivists need to know

See more topic specific research at the 

aHUS Alliance list of aHUS Publications

 

New publications on the general public & COVID-19 are  continually being released. One example regarding Critical Care is below:

Poston et al (26 Mar 2020)  Management of Critically Ill Adults With COVID-19

 

 

 

 

Many associations have offered information during the 2020 COVID-19 outbreak, to include medical professionals and specialists in fields of interest to the aHUS community.

Here are some examples of resources available, but many more exist to aid physicians and the public.  Many are nation-specific, so we caution readers to look for dates on materials to ensure that the COVID-19 information is updated – and to expand online research to find resources both in your nation and within international organizations.

 

 

 

Updated 6 April 2020

COVID-19 Info & Resources

 

 

Coronavirus: World Updates 

 

ECDC (EU Centre for Disease Prevention and Control):  World Epidemiological update

Situation update Worldwide, as of 6 April 2020

 

WHO (World Health Organization):  (5 April 2020)

Coronavirus disease 2019 (COVID-19) Situation Report  #76

 

 

 

Overviews of COVID-19 Testing & Biotech Efforts

 

M Palmer,  Small companies step up to big role in Covid-19   (20 March 2020)  Various companies & COVID-19 tests. Article graphic notes days from exposure to illness and recovery, while the article discusses COVID-19 testing in light of SARS antibody testing for IgG & IgM.

 

 

BIO.org   Current situations & initiatives in industry (by Company Name) in the fields of:  Diagnostics, Therapeutics, Vaccines   Biopharmaceutical Innovators Lead the Charge in Fight Against Coronavirus

 

 

 

Stay Home, Stay Safe, Stop the Spread – Media

 

 

TV Journalist with aHUS, on COVID-19  (Video & Article)   KSDK ‘5 On Your Side’ anchor Anne Allred writes frankly about the fears and anxieties she’s facing as someone who has a compromised immune system

 

Fabric Face Coverings, No Sew  Some nations have recommended use of a fabric face covering during the COVID-19 pandemic, and many resources exist online with Do-It-Yourself directions.  (Important Note Fabric face coverings cannot match effectiveness or replace medical grade face masks;)

One example of how to make a ‘No Sew’ washable, reusable fabric face covering, using a scarf/handkerchief and two elastic bands, is demonstrated here by Japanese Creations. Video   https://youtu.be/EAj12GKuAEk  Article & Written directions (EN):  http://blog.japanesecreations.com/no-sew-face-mask-with-handkerchief-and-hair-tie

 

Physical Distancing – Not convinced that it’s important to stop the spread of COVID-19? Based in Los Angles, artist Juan Delcan with partner V. Izaguirre made a 1:40 video of the ‘Matchstick People’ going about their lives, until at 1:20 mins.  In a row of burning matches, one Matchstick steps away to stop the fire’s spread.  https://vimeo.com/402423439

 

 

 

OTHER Languages:  COVID-19 Info

 

COVID 19:  En Français

French Healthcare Network for Rare Immune Hematological Diseases (MaRIH)

Maladies Rares Immuno-Hématologiques Et Coronavirus **Mise À Jour**

Edité par le centre de référence des Microangiopathies Thrombotiques (SHU Atypique)

RECOMMANDATIONS VIS-A-VIS DU COVID19 SPECIFIQUES AUX MAT

FR  COVID-19 & Transplants  (4 Apr 2020, Agence de la Biomédecine Update)  Point de situation au 14 avril 2020 Activité de prélèvement et de greffe d’organes et de tissus durant l’épidémie de COVID 19

FR Haut Comité de la santé publique  COVID-19 (en français)  Resource Hub: High Council of Public Health

 

 

COVID 19:  En Español

CDC:  Lo que necesita saber sobre la enfermedad del coronavirus 2019 (COVID-19)

CDC:  Preguntas frecuentes, Enfermedad del coronavirus 2019 (COVID-19)

 

 

COVID 19 on Vimeo – Multiple Languages (via USA, Portland ORE)

አማርኛ (Amharic)  https://vimeo.com/402796177

العربية (Arabic)  https://vimeo.com/402792787

Español (Spanish)  https://vimeo.com/402794380

中文 (Chinese, Mandarin)  https://vimeo.com/402794967

繁體中文 (Chinese, Cantonese)  https://vimeo.com/402794967

فارسی (Farsi)  https://vimeo.com/402796902

Français (French)  https://vimeo.com/402799212

日本語 (Japanese)  https://vimeo.com/402797380

한국어 (Korean)  https://vimeo.com/402798518

русский (Russian)  https://vimeo.com/402796177

ภาษาไทย (Thai)  https://vimeo.com/402793772

Tiếng Việt (Vietnamese)  https://vimeo.com/402792292

 

 

Previously Posted

COVID-19 Info & Resources

 

 

Coronavirus: COVID-19 General Information

 

WHO (World Health Organization):  Coronavirus disease (COVID-19) Pandemic

NEPH JC   A ‘living resource’ for nephrologists during the COVID-19 pandemic

ASH (American Society of Hematology)  COVID-19 Resources

WHO (World Health Organization): Coronavirus disease (COVID-19) Pandemic

European Centre for Disease Prevention and Control: an Agency of the EU  COVID-19

JAMA Network Coronavirus Disease 2019 (COVID-19) Resource Center

WHOCoronovirus Symptoms

NHSCOVID-19: Dos & Don’ts

CDCSchools, Workplaces & Community Locations

CDCCoronavirus:  Getting Ready at Home

National Kidney FoundationKidney Patient Prep for Coronavirus

KidneyCare UKCoronavirus (COVID-19) Guidance for patients with Kidney Disease

Renal & Urology News: Dialysis Facilities Brace for COVID-19

CDC:  Pregnancy & Breastfeeding, COVID-19 FAQ

RCOG: Pregnancy & COVID-19

Image from

ISN: Kidney International  Naicker et al (2020) The Novel Coronavirus 2019 epidemic and kidneys

 

 

 

 

Pediatrics

 

26 Mar 2020, pdf – UK, from BAPN (British Assn, Pedi Neph) & the Renal Ass’n.

Information and Guidance for Children on Haemodialysis, Peritoneal Dialysis and Immune suppression (including Renal Transplants)

 

COVID-19 in Kids:  Don’t Forget the BubblesAn Evidence Summary of Paediatric COVID-19 Literature 

 

 

Transplants

 

Global Transplantation Covid Report March 2020  The Transplantation Society, journal

 

Canadian Society of Transplantation:  COVID-19 Information

 

British Transplantation Society: COVID-19 Information

 

USA, United Network for Organ Sharing (UNOS): COVID-19 Information

 

American Society of TransplantationFAQ for Transplants & Coronavirus

 

 

 

 

 

Important Notes:

Review dates when COVID-19 information has been posted, to assure that you’re receiving the most updated and accurate details.

The aHUS Alliance suggests that you utilize online translation sites or apps to ensure that you’re viewing updated COVID-19 information, rather than depending on material that may have been translated days ago – and has become out-of-date.

Contact your medical team if you are experience what may be symptoms of COVID-19.  The aHUS Alliance, a global group of patient organizations in over 30 nations, cannot provide medical advice.

Physicians treating aHUS patients can reach out to colleagues for online professional support with the aHUS Alliance network of clinicians and investigators. Patients and aHUS family caregivers are encouraged to reach out to their national aHUS organization or to learn about the aHUS Alliance R.O.W. program to support new patient groups.

 

This resource page was created on 30 March 2020. 

 

 

Info@aHUSallianceAction.org