COVID-19

Rare urogenital diseases and complex conditions are not a contraindication for vaccinations, and our patients should receive the vaccination according to the risk for COVID-19.  We consider that patients with rare urogenital cancers (e.g., penile/testicular cancer and germ cell tumours) who are receiving chemotherapy should be a high priority for vaccination. Because they are receiving high-dose chemotherapy treatment, they are more vulnerable and have a higher risk of complications with COVID-19 infection. Moreover, these patients are curable from an oncological point of view.

A summary of the view of all ERNs on priorities and contra-indications for COVID-19 vaccination can be found here.

In many countries, booster vaccinations have become available, and therefore patients and families ask questions as to whether and when to receive a booster vaccine. As the evidence is scarce, and even more so in the field of rare diseases, it is not simple to give sound and scientifically based advice. Furthermore, the availability of vaccines may differ. It remains a priority to vaccinate all unvaccinated at-risk people.

Nonetheless, here we give some recommendations to the best of our knowledge as of November 2021:

• As vaccines are now widely available, all adults should be vaccinated twice.
• In children, the decision to vaccinate must be weighed against the risks individually, but generally, children from the age of 12 onwards should receive at least one vaccine shot, preferably two.
• In children below the age of 12, the vaccine has not yet been licensed in Europe, but very recently in the US. Even in Europe, the vaccine can be given on the basis of an individual risk assessment. Our advice would be to vaccinate younger children only if they are severely immunocompromised.
• Some patients do not mount a good immune response to the vaccines. This is true for all licensed vaccines.
• Decreased responses have in particular been described for organ transplant recipients and patients with haematological malignancies.
• Antibody titres and also T-cell response decrease with time, probably leading to a slow decrease in protection.
• Therefore: if possible, it makes sense to check the anti-SARS-CoV2 antibody levels (more than four weeks) after full vaccination, and to give a third dose to all patients not showing a good antibody response (at least 100 IU).
• For other rare disease patients, more than six months after the second vaccination, measuring the antibody titres, or simply opting for a third dose is reasonable, but not mandatory. An individual discussion with the patient’s disease specialist is to be recommended.
• The choice of vaccine for the booster dose is free and may differ from country to country according to availability and licensing. From a medical point of view, all licensed vaccines could be given as a booster vaccine, independent of the vaccine preparation used initially.
• If there have been specific side effects after the primary vaccination, you should discuss with your doctor choosing an alternative vaccine for the booster immunization.

Below is a list of resources and information we feel may be helpful:

• The World Health Organisation (WHO) has issued recommendations for protective measures against coronavirus.
• EURORDIS has created a COVID-19 Information Resource Centre and published statements regarding the special needs of patients with a rare disease. They also ran a webinar on the impact of COVID 19 for people living with a Rare Disease.
• The European Association of Urology (EAU) has published COVID-19 Resources for Urologists including Rapid Reaction Recommendations.
• ERN eUROGEN and the European Association of Urology (EAU) ran a webinar on Urology in the COVID-19 era.
• An EAU paper has been accepted by the Journal of Pediatric Urology on the clinical and surgical consequences of the COVID-19 pandemic for patients with pediatric urological problems.
• There is a dedicated European Commission (EC) webpage for actions relating to the ERNs and Covid-19.
• The EC has launched the COVID-19 Clinical Management Support System based on the ERN experience to help doctors exchange expertise concerning COVID-19.
• The EC has financed 17 new clinical trials after launching a request for expressions of interest entitled “SC1-PHE-CORONAVIRUS-2020: Advancing knowledge for the clinical and public health response to the [COVID-19] epidemic” with a budget of €10 million subsequently increased to €47.5 million.
• The EC has published Guidance on the Management of Clinical Trials during the COVID 19 (Coronavirus) pandemic to mitigate the negative effects of the COVID-19 pandemic on developing research, and to ensure the rights, safety and wellbeing of participants.
• The EC is funding a programme of training of healthcare professionals in intensive care skills to support frontline clinicians dealing with COVID-19.  Training is free of charge and available for every doctor and nurse working in a hospital with an Intensive Care Unit, in all 27 EU Member States and the UK. For information/registration please go to the dedicated webpage.
• Two new codes to identify COVID-19 using  ICD-10 classification have been approved and implemented into the CPMS production and training environment.
  • U07.1 COVID-19, virus identified  –  An emergency ICD-10 code to be assigned to a disease diagnosis of COVID-19 confirmed by laboratory testing.
  • U07.2 COVID-19, virus not identified – An emergency ICD-10 code to be assigned to a clinical or epidemiological diagnosis of COVID-19 where laboratory confirmation is inconclusive or not available.
• A collaboration between hospitals in Spain and Argentina is coordinating an international registry aimed at recording paediatric and adult patients who, in addition to the diagnosis of a rare disease, have been treated for infection by COVID-19. Patients can be added to the registry through their online portal.
• The open-access article on “The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET” provides an excellent overview of the challenges faced by healthcare providers, institutions, patients and their families and shows that ERNs are fundamental to ensuring continuity of care.
• In addition, the results of a survey evaluating the impact of COVID-19 on groups who are supporting people with rare diseases during the pandemic, highlights the challenges patient groups are facing, such as increased calls to their helplines, traffic to their websites, and followers on their social media.