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:

 

Important Note: 

Information & Research about COVID-19 changes every day, making it essential for people to monitor news in their nation.  International collaborations understandably maintain strict control over information about clinical trials, research efforts, and intellectual property relating to COVID-19 discoveries.

To keep abreast of advancements, utilize key search terms including:

convalescent plasma (antibodies)

monoclonal antibodies (synthetic)

COVID-19 & stem cells

Vaccines

 

 

 

 

Updates for November 2020

 

Specific to Atypical HUS

 

11 Nov 2020

Ville et al.  Atypical HUS relapse triggered by Covid-19  (KI Reports)

Case study, 1st reported case of aHUS relapse triggered by COVID-19. “Nevertheless, our observation underlines the need for a close monitoring of aHUS patients who discontinued eculizumab in the setting of COVID-19. It also a further indication that complement blockade should not be discontinued in aHUS during infectious episodes, COVID-19 not being an exception.”

 

 

Alizadeh et al. Toddler with New Onset Diabetes & aHUS in the setting of COVID-19  (Nov Issue: Pediatrics)

Case study, ‘likely to be a case of aHUS triggered by COVID-19″ and with multiple complexities. “This is a novel case of a 16-month-old male with a history of prematurity with
intrauterine growth restriction, severe failure to thrive, microcephaly, pachygyria, agenesis of the
corpus callosum and postnatal embolic stroke, who presented with new-onset diabetes mellitus
with diabetic ketoacidosis in the setting of SARS-CoV-2 infection, with a course complicated by
atypical hemolytic syndrome (aHUS).”

 

 

Covid-19 Info of interest to the aHUS community

 

22 Nov 2020

Vaccine News – AstraZeneca & University of Oxford announced its positive results from their Phase III trials that show their candidate vaccine, ChAdOx1 nCoV-2019, is effective at preventing COVID-19.

Oxford University website: Oxford University breakthrough on global COVID-19 Vaccine

 

21 Nov 2020

COVID-19 Treatment News – Combination of 2 Drugs approved in the USA to treat mild to moderate COVID-19 in adults, as well as in pediatric patients at 12 years of age.  From the Regeneron corporate website,

Regeneron’s Casirivimab And Imdevimab Antibody Cocktail For Covid-19 Is First Combination Therapy To Receive FDA Emergency Use Authorization

 

16 Nov 2020

Moderna releases 1st interim set of data from their Phase 3 study of the company’s COVID-19 vaccine candidate, mRNA-1273, which indicated a vaccine efficacy of 94.5%. Moderna will submit an ‘Emergency Use Authorization’ to the US FDA in the coming weeks.

Like the 2 dose injection noted by Pfizer/BioNTech COVID-19 vaccine (9 Nov), Moderna’s mRNA-1273 vaccine also utilizes a messenger RNA approach. Moderna’s vaccine is reported to requires less special storage/handling conditions to ease distribution of the vaccine.

FMI: Moderna (corporate site, IR)

BusinessWire, Press Release

 

9 Nov 2020

Advancements in mRNA – An Approach to COVID-19 Vaccines  (aHUS Alliance, article)

Pfizer & BioNTech announce positive data regarding their COVID-19 vaccine candidate. What’s messenger RNA (mRNA)? The aHUS Alliance compiles info & resources for background on mRNA & its potential to prevent disease.

 

9 Nov 2020

USFDA issues “emergency use authorization (EUA) for the investigational monoclonal antibody therapy bamlanivimab for the treatment of mild-to-moderate COVID-19 in adult and pediatric patients.”

Read the full press release HERE

 

 

 

Updates for October 2020

 

Covid-19 Info of interest to the aHUS community

 

27 Oct 2020

Kant et al The COVID-19 nephrology compendium: AKI, CKD, ESKD and transplantation

Key resource for impact of COVID-19 across a range of nephrology issues – dialysis, transplant, patterns of injury to the kidney, management of immunosuppression, and more.  Open access

 

20 Oct 2020

Francis Collins  Two Studies Show COVID-19 Antibodies Persist for Months

USA:  Article by the Director of the National Institute of Health (NIH)   On the topic of whether those who have experienced COVID-19 infection have acquired immunity against being ill a second time.

 

12 Oct 2020

Magro et al. Docked SARS CoV-2 Proteins within the Cutaneous and Subcutaneous Microvasculature and their Role in the Pathogenesis of Severe COVID-19

A study to determine if a specific type of skin biopsy can work to assess the status of patients with severe forms of COVID-19.  “A deltoid skin biopsy has been used to diagnose patients with other systemic complement-mediated microvascular injury syndromes such as atypical hemolytic uremic syndrome (aHUS) and differentiate these disorders from thrombotic thrombocytopenic purpura associated with antibodies to ADAMSTS13”

 

 

 

Updates for September 2020

 

Specific to atypical HUS

 

27 Sept 2020

Trimachi et al   Eculizumab, SARS-CoV-2 and atypical hemolytic uremic syndrome

Case Study of an aHUS patient (male age 24) with 6 yr history of kidney transplant: “Microthrombotic biomarkers were absent. One week later he developed respiratory failure, fever and radiological progression of the CT scan infiltrates (Figure 1B), associated with elevated inflammatory biomarkers. In the intensive care unit (ICU), the antibiotic regime was switched to vancomycin and cefepime and hydrocortisone was changed to IV dexamethasone 6 mg/day. A 200-mL convalescent plasma infusion was prescribed. He received oxygen via mask reservoir (5 L/min) and vigil pronation cycles and showed a sustained improvement without the need for mechanical ventilation.”

 

 

Other Covid-19 Info of interest to the aHUS community

12 Sept 2020

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 – Click to view the List of 3296 Studies

3296 Studies as of 12 Sept 2020

 

15 Sept 2020

Sarkar et al. Potential Therapeutic Options for COVID-19: Current Status, Challenges, and Future Perspectives 

A look at potential drugs to treat COVID-19 patients, this review include monoclonal antibodies (such as ravulizumab & eculizumab) as well as other therapeutic drugs.  Could aHUS knowledge be expanded by new information about how these drugs work to tamp down complement and reduce inflammation?

 

 

Tabbibi et al, Journal of Intensive Care (Sept 2020) Therapeutic Plasma Exchange: A potential Management Strategy for Critically Ill COVID-19 Patients

“The morbidity and mortality of the infection varies based upon patient age, comorbid conditions, viral load, and the availability of effective treatments.”  AND

“Therapeutic plasma exchange (TPE) merits consideration in the treatment of critically ill COVID-19 patients and is an avenue for clinical trials to pursue. If efficacious, faster recovery of patients may lead to shorter intensive care unit stays and less time on mechanical ventilation. Herein, we briefly discuss some of the various approaches currently being investigated for the treatment of SARS-CoV-2 with a focus on potential benefits of TPE for selected critically ill patients.”

 

 

 

Updates for August 2020

Specific to atypical HUS

13 Aug 2020

ARTICLE:  Like an Agatha Christie Story!

 

Other Covid-19 Info of interest to the aHUS community

 

23 Aug 2020

Pediatric Nephrology (journal):  Be aware of acute kidney injury in critically ill children with COVID-19   “An inflammatory storm and complement-mediated injury may underlie AKI development in children with COVID-19.”

 

11 Aug 2020

Nature:  Antibody therapies could be a bridge to a coronavirus vaccine — but will the world benefit? As the race to develop a vaccine against COVID-19 rages on, some researchers are focused on a short-term way to treat people with the disease: monoclonal antibodies.”  AND  “But mass-produced antibodies, routinely used to treat diseases such as cancer, are complex to manufacture and come with a hefty price tag. That risks placing them beyond the reach of poor countries.”

 

6 Aug 2020

Java et al (JCI Insight)  The complement system in COVID-19: friend and foe?

“We posit that (a) coronaviruses activate multiple complement pathways; (b) severe COVID-19 clinical features often resemble complementopathies; (c) the combined effects of complement activation, dysregulated neutrophilia, endothelial injury, and hypercoagulability appear to be intertwined to drive the severe features of COVID-19; (d) a subset of patients with COVID-19 may have a genetic predisposition associated with complement dysregulation; and (e) these observations create a basis for clinical trials of complement inhibitors in life-threatening illness.”

 

6 Aug 2020

Clinical Immunology (research):  Anti-complement C5 therapy with eculizumab in three cases of critical COVID-19

“Respiratory failure and acute kidney injury (AKI) are associated with high mortality in SARS-CoV-2-associated Coronavirus disease 2019 (COVID-19). These manifestations are linked to a hypercoaguable, pro-inflammatory state with persistent, systemic complement activation.” AND “In conclusion, anti-complement therapy may be beneficial in at least some patients with critical COVID-19.”

 

4 Aug 2020

Science (magazine):  Designer antibodies could battle COVID-19 before vaccines arrive

While the world is transfixed by the high-stakes race to develop a COVID-19 vaccine, an equally crucial competition is heating up to produce targeted antibodies that could provide an instant immunity boost against the virus. Clinical trials of these monoclonal antibodies, which could both prevent and treat the disease, are already underway and could produce signs of efficacy in the next few months, perhaps ahead of vaccine trials.”

 

 

 

Updates for JULY 2020

 

Specific to atypical HUS

 

13 July

ARTICLE:  aHUS Health, Well-Being and Work

Data from the aHUS global patient registry includes topics like fatigue and quality of life issues for aHUS patients who have never used eculizumab, as well as during use and post-use of that thereapeutic drug.  “Increasingly there are reports that there will be a surge of stress in those survivors of COVID 19 with the trauma of experiencing the severe near death form of the illness.”

 

Other Covid-19 Info of interest to the aHUS community

1 July 2020

CJASN:   COVID-19 Outbreak and Management Approach for Families with Children on Long-Term Kidney Replacement Therapy

Regarding COVID-19 and children on long term dialysis, “The coronavirus disease 2019 outbreak has had physical, mental, logistical, and financial effects on families with children on long-term KRT.”

 

 

Updates for JUNE 2020

 

Specific to atypical HUS

 

24 June 2020

ARTICLE:   aHUS 2020 Therapeutic Drug Landscape  (the impact of COVID-19 on aHUS research)

 

18 June 2020

ARTICLE:  German aHUS Patient Day Webinar (in German, held 6 June 2020)

 

14 June 2020

ARTICLE:  aHUS in Deutschland –  (With COVID-19 content  (in German) from  Sebsthilfegruppe  aHUS und MPGN

 

1 June 2020

ARTICLE:  The Sun Rises, but It’ll never be the Same Again

 

Other Covid-19 Info of interest to the aHUS community

 

18 June 2020

JCI Insights (Journal of Clinical Investigation) The complement system in COVID-19: friend and foe?

Java et al propose that the coronavirus activates multiple complement pathways, perhaps with a COVID-19 patient subset genetically predisposed to complement-mediated diseases.

 

7 June 2020

Kidney International Thrombotic microangiopathy in a patient with COVID-19

Case history of a 69 year old patient with coronavirus disease (COVID-19), whose medical history included asthma, and diagnosed with thrombotic microangiopathy via a kidney biopsy.

 

2 June 2020

Campbell and Kahwash. Will Complement Inhibition Be the New Target in Treating COVID-19–Related Systemic Thrombosis?

 

 

 

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.)

 

27 May 2020

Journal of Clinical Investigation:  COVID-19, microangiopathy, hemostatic activation, and complement

On COVID-19 and complement:  “Our understanding of inappropriate complement activation in human disease derives mainly from genetic mutations of complement proteins — either loss-of-function mutations in regulatory proteins that protect host tissues under homeostatic conditions or gain-of-function mutations resulting in resistance to regulatory protein surveillance”   AND  “The thrombotic microangiopathy (TMA) of the atypical hemolytic uremia syndrome (aHUS) leads to thrombocytopenia, hemolytic anemia, and renal failure. However, thrombotic events in aHUS are not confined to the kidney; 3% to 10% of patients have cardiac complications due to coronary microangiopathy, and patients often develop complications involving other organs. The most frequent mutations in aHUS are found in the regulatory protein factor H (FH), and such mutations lead to MAC-mediated endothelial injury and capillary thrombosis, which are the hallmarks of TMA.”

 

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

 

7 May 2020

Kidney International:  Naiker et al.  The Novel Coronavirus 2019 epidemic and kidneys

Kidney experts weigh in on key issues on how COVID-19 affects the kidneys and management of various clinical presentations of the disease.

 

5 May 2020

British Journal of Hematology.  Severe COVID‐19 infection and thrombotic microangiopathy: success does not come easily

Gavriilaki and Brodsky make the case for why COVID-19 cases should be considered ‘through the prism of TMA’.

 

Updates for MAY 2020

 

23 April

Risitano et al. Complement as a target in COVID-19?  

“Most patients who become critically ill following infection with SARS-CoV-2, the causative agent of COVID-19, develop acute respiratory distress syndrome (ARDS)1. The deterioration of lung function has been attributed to a maladaptive immune response rather than increased viral loads.” AND

“Complement is a key player of protective immunity against pathogens, but its excessive or deregulated activation may result in collateral tissue injury. However, complement inhibitors are currently only used in rare human diseases, such as paroxysmal nocturnal haemoglobinuria. In these unprecedented times, we would encourage all complement-dedicated pharmaceutical companies, as well as individual scientists, to actively contribute to our efforts to understand the role of complement in 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