COVID-19

COVID-19: ERN eUROGEN Statement and Resources

UPDATE (2 September 2022): The EC has published a Factsheet “EU response to COVID-19: preparing for autumn and winter 2023“.

During these difficult and unprecedented times, ERN eUROGEN hope that all of our patients, collaborators and their families can manage their health requirements as best as possible, and wish them the strength needed to get through this crisis.

Please follow your National, Local and Healthcare Provider advice. Local protocols on how to proceed have been developed by experts with your best care in mind.

Vaccinations (including Boosters):

Rare uro-recto-genital diseases and complex conditions are not a contraindication for vaccinations and our patients should receive the vaccination according to the risk for COVID-19 according to the EU.  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.

Other Information:

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