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Hospital La Paz hosts the 4th meeting of the European Reference Network TransplantChild (0)

Madrid hosted in Hospital La Paz the 4th meeting of the European Reference Network TransplantChild 

https://www.diariodicen.es/201805/madrid-acogio-en-la-paz-la-cuarta-reunion-de-la-red-europea-transplantchild/

https://www.consalud.es/autonomias/c-madrid/la-paz-acoge-la-cuarta-reunion-de-la-red-europea-transplantchild_50095_102.html

 

 

The Community of Madrid hosted the 4th meeting of the European Reference Network in Paediatric Transplantation (ERN TransplantChild) coordinated by the Hospital La Paz, with the attendance of the representatives of 16 of the 18 hospitals belonging to the network. Among the priority objectives of this meeting are the establishment of an informed consent for the virtual advice of patients and the constitution of the ethics committee of the network.

One year after its launch, the European Referent Networks such as TransplantChild, are helping patients to have access to diagnosis and treatment of rare diseases and highly complex procedures. Currently, more than 900 healthcare providers specialised from more than 25 countries of the European Union and Norway are participating, working together to improve the care of a broad group of patients with 24 thematic networks. TransplantChild is the only network focused on a complex procedure and it is also the only one that is coordinated from Spain. Hospital La Paz is a reference in Europe in paediatric transplantation since it can perform all type of transplants accredited to date. Last year, it carried out 24 liver, 5 intestine, 7 heart, one lung, 15 kidney and 30 haematopoietic progenitors transplants in children.

This year, progress has been made in the best care of paediatric transplanted patients through the use of an IT platform developed by the European Commission, and that in an innovative way, allows the virtual advice from a group of experts to any patient without having to travel. That implies sharing of knowledge, information exchange and reducing the difficulties caused to the patient by travelling between regions and countries in the European Union.

TransplantChild allows concentration of knowledge from experts in all type of paediatric transplants, both solid organ and haematopoietic progenitors, to advance in the improvement and quality of life, safety and care of the transplanted children and their families. During the first year, a focus has been made in the identification of topics of interest for the development of clinical guidelines, education activities and training of healthcare professionals, promotion of research, quality and safety of transplantation and also the identification of critical knowledge that would allow better resources and support in paediatric transplantation.

In order to inform better to patients about the resources available in transplantation, a review of more than 3.400 diagnoses collected by the Orphanet portal of rare diseases susceptible to a transplant has been carried out and the categories of diseases susceptible to solid organ or bone marrow transplantation have been created.

The network also participates in the initiative of the Joint Research Centre for the standardisation of registries in rare diseases and complex procedures. This is the first time that an effort has been made to standardise the registration process of paediatric transplantation and has been done with the support of the National Transplant Organisation and the Carlos III Health Institute through the Telemedicine and eHealth Research Unit.

Regarding the recent outbreak of a novel coronavirus (2019-nCoV) TransplantChild network has compiled a series of information in the format of the frequently asked questions related to the transplant recipients and their families as well as to healthcare professionals. Attached are updated links to the competent bodies that are making global recommendations at the international level on issues related to coronavirus.

 

What is SARS-CoV-2? What is COVID-19?

Coronaviruses are a large family of viruses that are common in people and many different species of animals, including camels, cattle, cats, and bats. Rarely, animal coronaviruses can infect people and then spread between people such as with MERS-CoV, SARS-CoV, and now with this new virus (named SARS-CoV-2). (1,2)

 

What is the mode of transmission? How (easily) does it spread?

While animals are the original source of the virus, it is now spreading from person to person (human-to-human transmission). There is not enough epidemiological information at this time to determine how easily and sustainably this virus spreads between people, but it is currently estimated that, on average, one infected person will infect between two and three more. The virus seems to be transmitted mainly via respiratory droplets that people sneeze, cough, or exhale. The virus can also survive for several hours on surfaces such as tables and door handles. (1,2)

The incubation period for COVID-19 (i.e. the time between exposure to the virus and onset of symptoms) is currently estimated at between two and 14 days. At this stage, we know that the virus can be transmitted when people who are infected show flu-like symptoms. It is currently believed that people who are infected but who do not show symptoms cannot transmit the virus. (1,2)

 

What are the symptoms of COVID-19 infection?

The virus can cause mild, flu-like symptoms such as:

  • fever
  • cough
  • difficulty breathing
  • muscle pain
  • tiredness

More serious cases develop severe pneumonia, acute respiratory distress syndrome, sepsis and septic shock that can lead to death. (3)

 

Are transplant patients at higher risk for COVID-19?

Infection still needs to be acquired from someone who is shedding virus. It is not proven but appears that asymptomatic transmission can occur. The incubation is 2-14 days in the general population; however, the inoculum size required to infect a transplant patient may be lower (4).

Although many patients had co-morbidities in the reported series, none has been a transplant recipient to date. Hence a description of the disease in transplant recipients is still not available. Nevertheless, the lymphocyte count was lower in those who required ICU care, and in those who perished (4).

 

Many transplant recipients have medication-induced lymphopenia. Particularly close attention should be paid to transplant patients with suspected or confirmed COVID-19 infection who are lymphopenic. Such attention may include admission (rather than care at home) and paying careful heed to oxygen saturation. Among comorbidities of interest, more patients who required ICU care had cardiovascular diseases, compared with those who did not require ICU care(4,5).

 

Based on data from influenza and SARS, if infection occurs, progression to pneumonia will likely be more common in the immunocompromised population, including transplant recipients. In addition, a greater viral burden and shedding will likely result in greater infectivity. Healthcare transmissions of COVID-19 have occurred and given the potential for greater infectivity, strict isolation precautions should be followed (2,4).

 

Box 1. The WHO recommendations on how to protect yourself and the others from COVID-19 (5)

1.      Wash your hands frequently with an alcohol-based hand rub or with soap and water.

2.      Maintain social distancing of at least 1 meter between yourself and anyone who is coughing or sneezing.

3.      Avoid touching eyes, nose and mouth.

4.      Practice respiratory hygiene (covering your mouth and nose with your bent elbow or tissue when you cough or sneeze and then dispose of the used tissue immediately).

5.      If you have fever, cough and difficulty breathing, seek medical care early, but call in advance and follow the directions of your local health authority.

6.      Stay informed and follow the advice given by your healthcare provider, your national and local public health authority since they can provide you with reliable information on whether COVID-19 is spreading in your area.

7.      Additionally, in case of persons who are in or have recently visited (past 14 days) areas where COVID-19 is spreading, stay at home if you begin to feel unwell, even with mild symptoms, until you recover, but if you develop fever, cough and difficulty breathing, seek medical advice promptly by calling your health provider to so you can be quickly directed to the right health facility.

 

 

Are there any specific travel restrictions for transplant patients?

There are two categories of patients here – those returning from a transplant performed abroad, and those returning from a holiday or work stint abroad. From an infection prevention viewpoint, both categories of patients may be managed similarly (6).

Teams should follow local health department guidelines for isolating, quarantining, testing, and monitoring returned travellers from endemic areas. Examples of such guidelines include (CDC:  https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html; PHE:  https://www.gov.uk/guidance/wuhan-novel-coronavirus-information-for-the-public#advice-for-travellers ).

The CDC has recommended suspending all non-essential travel to China, Iran, Italy and South Korea. It is also recommended to avoid cruises into or within Asia. Enhanced precautions are recommended with travel to Japan. Transplanted patients do not travel to any of these locations. Travel restrictions to other locations will depend on virus activity and will change over time.

Like all persons, transplant recipients should adhere to travel advisories issued by their respective health authorities/government bodies.  This may necessitate postponing travel to China, Iran, Italy, Japan and South Korea

 

The CDC and WHO maintain websites that are being updated daily as the outbreak evolves, and travel recommendations will likely change over time.

 

Should transplant patients wear a mask or avoid public places?

 In general, transplant patients should exercise caution about being in overcrowded situations. Frequent handwashing or hand sanitizer use helps prevent infection (4). The benefit of wearing masks in public is controversial even for transplant patients and it is unknown how much wearing a mask will help prevent infection. Most surgical masks are not tight-fitting and aerosols can get through. However, they may prevent patients from touching their nose and mouth. It is unclear if an N95 mask is better than a regular surgical mask since proper fit testing has not been performed. An N95 mask can be uncomfortable to wear for prolonged periods. The CDC is not recommending mask use for infection protection outside the hospital at this time.

 

What is the approach to transplant recipients with flu-like/respiratory symptoms?

There are many different causes for flu-like/respiratory symptoms. Your hospital should have protocols in place for transplant patients with flu-like/respiratory symptoms. Consult your local hospital practices for outpatient transplant clinic screening or visitor restrictions for transplant recipients as these may evolve over time.

CDC has updated guidelines for infection control (https://www.cdc.gov/coronavirus/2019-ncov/infection-control/controlrecommendations.html ). Engagement of Transplant Infectious Diseases should be considered for suspected cases.

The CDC has also established interim risk criteria for exposure to the COVID-19 that are being updated as the outbreak evolves (https://www.cdc.gov/coronavirus/2019-ncov/php/risk-assessment.html ). Testing for COVID-19 is done via a specific RT-PCR on nasopharyngeal and oropharyngeal swabs. The novel coronavirus is not detected using the standard respiratory virus multiplex tests.

 

Should living and deceased donors be screened?

Travel history for the deceased donor is essential and should consider travel to China, Iran, Italy, South Korea, or anywhere local transmission is occurring. History of contact with a known case of COVID-19 should also be elicited. A deceased donor with known or highly suspected COVID-19 infection should be deferred for all organs to avoid transmission to the recipient as well as to the healthcare team (1,2).

Case-by case consideration is required for deceased donors with epidemiologic risks and within the 14 days incubation period, but otherwise asymptomatic or for those that were previously infected with COVID-19 but have recovered (5).

Each case should take into account the urgency of transplant and the potential risk to the recipients, as well as consider isolation interventions if organs are used.

Living donors with travel to a high-risk area in the last 14 days should be deferred until 14 days from travel. Potential living donors can be advised to not travel to areas where local transmission is occurring and to report new-onset cough and flu-like symptoms. Routine testing of living and deceased donors for COVID-19 is not suggested at this time. This may evolve over time as the outbreak situation evolves. The current outbreak is unpredictable. If widespread community-transmission occurs, healthcare infrastructure and capacity issues may have a further impact on donation and transplantation (1,2).

 

Are there any treatments for COVID-19?

Currently, the treatment is supportive care. Potential antiviral candidates are undergoing testing and vaccines are under development. However, it may be several months before any of these are approved (4,7).

 

Useful links:

 

  1. Centers for Disease Control and Prevention. Coronavirus Disease 2019 (COVID-19) Situation Summary. March 09, 2020. Accessible here:  https://www.cdc.gov/coronavirus/2019-nCoV/summary.html.
  2. European Centre for Disease Prevention and Control. Q & A on COVID-19. March 06, 2020. Accessible here:  https://www.ecdc.europa.eu/en/novel-coronavirus-china/questions-answers
  3. British Liver Trust. Coronavirus (COVID-19) – health advice for people with liver disease and liver transplant patients. .  Updated 28 February 2020. Accessible here: https://britishlivertrust.org.uk/coronavirus-covid-19-health-advice-for-people-with-liver-disease-and-liver-transplant-patients/
  4. American Society of Transplantation. COVID-19 (Coronavirus): FAQs for Organ Transplantation. Updated: February 29, 2020. Accessible here: https://www.myast.org/sites/default/files/COVID19%20FAQ%20Tx%20Centers%20030220-1.pdf
  5. World health organization. Coronavirus disease (COVID-19) outbreak. Accessible here: https://www.who.int/news-room/q-a-detail/q-a-coronaviruses
  6. Organ Procurement and Transplantation Network. Information for transplant programs and OPOs regarding 2019 Novel Coronavirus.  Updated 28 February 2020. Accessible here: https://optn.transplant.hrsa.gov/news/information-for-transplant-programs-and-opos-regarding-2019-novel-coronavirus/
  7. The Transplantation Society. An Update and Guidance on 2019 Novel Coronavirus (2019-nCov) for Transplant ID Clinicians. Updated 27 February 2020. Accessible here: https://tts.org/23-tid/tid-news/657-tid-update-and-guidance-on-2019-novel-coronavirus-2019-ncov-for-transplant-id-clinicians
Dear all;

Considering the latest development on the COVID-19 spread in Europe and the numerous recent upgrade on travel restrictions for employeesthe Organising Committee has decided to postpone the 2nd TransplantChild Workshop on Translational Research.
 
We will update you once we have a new date but we expect it to be held in autumn.

We apologize for the inconvenience caused.
Dear all;

Considering the latest development on the COVID-19 spread in Europe and the numerous recent upgrade on travel restrictions for employeesthe Organising Committee has decided to postpone the 2nd TransplantChild Workshop on Translational Research.
 
We will update you once we have a new date but we expect it to be held in autumn.

We apologize for the inconvenience caused.

 

La Paz University Hospital, TransplantChild Coordinator Centre, is organizing the II Solidary Run for Paediatric Transplantation. It will take place on March 15th in Madrid. This event aims to make visible the importance of treatment and research in transplantation in children. Registration is already open!

Check the website for more information and registration:

WEBSITE & REGISTRATION

Dear colleagues,

We are organizing the 2nd TransplantChild workshop on translational research: "Novel strategies in paediatric transplantation". We wanted to know if you wanted to collaborate with the course by giving some support or disseminating this email.

The workshop will take place in Warsaw, Poland, on May 14th 2020. The main aim is addressing training in the area of paediatric transplantation according to the holistic approach of the network, providing skills to perform a common and transversal approach to all types of paediatric transplantation procedures. This edition will be focused on medical and nursing teams involved in the follow-up of paediatric transplanted patients.

SEE FULL PROGRAMME

Registration for the workshop is already open. You can also submit your abstract and be eligible to obtain a grant that will cover the workshop fee. You can submit an abstract for the following categories:

  • Oral Presentations: Aimed at Nursing Teams. 20 minutes talks related to the area of the course.
  • Clinical Cases: Oriented to Medical Teams. 20 minutes presentation of a clinical case of paediatric transplantation.
  • Poster Presentations: For both Nursing & Medical Teams. Posters related to translational research in paediatric transplantation to be presented in a Poster Walk.

REGISTER NOW

SUBMIT YOUR ABSTRACT

The registration form, abstract submission and all the workshop information is available on the website: https://www.transplantchild.eu/course2020/workshop/

 

Dr. Samantha Anthony was invited to the 7th Board of the Network to present her project: "Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review". She is a Social Worker within the Transplant and Regenerative Medicine Centre and a Health Clinician Scientist at SickKidsDr. Anthony is a Scientist-Track Investigator in the Child Health Evaluative Sciences Program of the Research Institute. She leads a clinical research program focused on establishing a foundation for successful psychosocial adaptation and enhanced quality of life for children with chronic disease, with a particular focus on solid organ transplantation. Patient-engagement, mixed methods and Patient-Reported Outcomes Measures (PROMs) are all key elements of her research portfolio.

From TransplantChild, we are willing to work and research in PROMs and Patient Reported Experiences Measures (PREMs). We will also integrate PROMs in our registry, so we will be collaborating with Dr. Anthony to keep promoting research in these areas.

The use of PROMs and PREMs in the paediatric transplanted patient's healthcare will allow to:
  1. Give a general description of patients' health.
  2. Identify incipient conditions and disabilities.
  3. Monitor the evolution of the disease with the treatment.
  4. Evaluate the patients' perceived necessities.
  5. Create treatments consistent within patients' preferences and needs.
  6. Improve the communication between the clinician and the patient.
  7. Provide data reported by patients to improve quality.
  8. Standardise the interactions between patients and HealthCare Providers.

 

The ERNs help patients with rare or low-prevalence complex diseases. A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5.000 and 8.000 of rare diseases affect the daily life of around 30 million people in the EU.

 

More information

ERNs’ virtual consultations are carried out through the CPMS system, these advisory boards follow a series of steps listed below. Experts across Europe are invited to collaborate giving advice in consultation panels in the diagnosis or treatment of low prevalence and complex conditions

 

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