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Survey on COVID-19 vaccination in AA/PNH patients


Dear fellow AA and PNH patients,

In this survey, we would like to ask you a few questions about COVID-19 vaccination in patients with aplastic anaemia (AA) and/or PNH. Our aim is to gain knowledge about the effects of both COVID-19 vaccination and COVID-19 disease in this group of patients in order that scientists can consider these effects to improve care in the future.

Data are collected completely anonymously, i.e. without any personal or personally identifiable information. There is no way that your data can be linked to you afterwards. If you would like us to send you further information or results about this survey you can enter your email address after completing the survey. Your email address will be stored separately from the survey data.

Procedure

1. In the survey form, choose an identification code (ID) of at least 12 characters. Your ID should contain letters, numbers, and special characters.
2. When you first fill in the survey please do so as completely as possible.
3. To include further information at a later date (e.g. different temperatures) enter your ID and your additional information.

In order to obtain reliable results, it is important that when you answer the survey questions you do so as truthfully and comprehensively as possible, and add any further information later. This includes blood counts, body temperatures, new medications, vaccinations, vaccination reactions, COVID-19 tests, symptoms of a COVID-19 infection, and much more. This information is important for follow-up purposes.

Filling in the fields

Please read the consent form for the storage of your data. You must complete the consent form by ticking "yes" otherwise your information will not be sent to us. Furthermore, your ID is a mandatory entry as we need it to merge any further details with your original survey response (see above). Therefore, please note your ID.

All other survey questions are optional, but the more details you provide the more detailed the evaluation can be. For example, if you take your body temperature after a vaccination, we can draw more accurate conclusions with several temperature entries at different times or days than with only one value, but it is most important that we get at least one value, e.g. the maximum value.

Personal Data: In addition to your self-chosen ID, we ask for your gender, year of birth, country and zip/postal code so that we can correlate the data with the usual population tables.

Diseases: In addition to the underlying disease (AA or PNH), we would like to record other diseases that may influence the course of these diseases in order to be able to form subgroups if there are enough participants.

Therapies: Certain medications or therapies, e.g. stem cell transplant, the infusion of a complement inhibitor, taking cortisol or a previous influenza vaccination are included because they may have an influence on the course of the infection.

COVID-19: The information relates to vaccination, vaccination reactions, tests, and possible SARS-Cov-2/COVID-19 infection.

Examinations/symptoms: This includes, for example, body temperature, blood count or a , COVID-19 tests performed.

Habits: Other possible factors influencing the risk of infection or the course of the disease, e.g. exercise, use of public transport, work or shopping are requested in this section.

When you first fill in the survey you need about 10-15 minutes. Entering any additional information at a later point takes just a few minutes. Please have your vaccination and medication documents at hand.

If you have any questions or suggestions, please feel free to contact us by email at info(at)aa-pnh.org.

Please inform other AA/PNH patients about this survey after you completed it as the more participants we have, the better this research will be.

Thank you for your participation. You will be helping all AA and PNH patients!


Personal Data
at least 12 characters; please choose your ID yourself and note it for further entries

Diseases

Therapies

Anti thymocyte globulin, also called Anti lymphocyte globulin (ALG)
e.g. prednisolone, prednisone, budesonide
packed RBC, erythrocyte concentrate
thrombocyte concentrate, transfusion of platelets


COVID-19


First COVID-19 vaccination
See the little sticker on your vaccination documentation for the batch number.
e.g. sore arm, tiredness, headache, muscle or joint pain, fever or chills
Second COVID-19 vaccination
See the little sticker on your vaccination documentation for the batch number.
e.g. sore arm, tiredness, headache, muscle or joint pain, fever or chills
Third COVID-19 vaccination
See the little sticker on your vaccination documentation for the batch number.
e.g. sore arm, tiredness, headache, muscle or joint pain, fever or chills
SARS Cov-2/COVID-19 antigen, PCR or antibody test
The Ct value shows the result of the PCR test.
The Ct value shows the result of the PCR test.
The Ct value shows the result of the PCR test.
The Ct value shows the result of the PCR test.
The titre indicates the level of immunosation i.e. how efficient the vaccination is.
The titre indicates the level of immunosation i.e. how efficient the vaccination is.

Diagnosis of SARS-Cov-2/COVID-19


Examinations/symptoms

whitw blood cells, leukocytes
rote Blutkörperchen, Erythrozyten
haemoglobin
haematocrit, proportion of erythrocytes in full blood
platelets, thrombocytes
neutrophils, subgroup of leukocytes
lymphocytes, subgroup of leukocytes
eosinophiles, subgroup of leukocytes
monocytes, subgroup of leukocytes
basophils, subgroup of leukocytes
lactate dehydrogenase, increased LDH can indicate cell damage
C-reactive protein, increased CRP indicates inflammation
Prothrombin time indicates time needed to clot
International Normalized Ratio, used to determine clotting tendency

Body temperature

If your temperature was taken please enter the value taken at different times, even if showed to be in the normal range.
If you do not remember your exact temperature please estimate.


Habits

Consent to data storage