vaccination Tag

Update of PNH guideline

Photo: psdesign1_fotolia

 

Guidelines are summaries of the current scientific knowledge about a disease – in addition to a complete list of possible symptoms and the most targeted diagnostic methods, you can read about the best possible treatment options according to the current state of knowledge. They serve primarily as a non-binding guide for doctors, but also contain interesting information for patients. Every now and then, guidelines are updated so that the findings of new studies can be incorporated into everyday medical practice - this is exactly what happened this month for the PNH guideline of the German Society of Haematology and Medical Oncology (DGHO) . The last version was still from November 2019 and a revision was necessary in particular to bring recommendations on the use of new drug therapy options up to the status of 2022: Specifically, we are talking about pegcetacoplan, the new C3 complement inhibitor, which has been approved in the EU since December 2021 under the trade name Aspaveli® and, according to the manufacturer Swedish Orphan Biovitrum AB (Sobi), is expected to be available as a therapy option in Germany from April 2022. WEITER

Reminder: Survey on COVID-19 at AA and PNH

syringe with vials for vaccination © weyo

We read and hear it every day in the newspaper and on the radio - the COVID vaccination operation is in full swing and the number of first and second vaccinated people in Germany is steadily increasing. The proportion of vaccinated AA / PNH patients is also increasing, but whether and how they react to the vaccination compared to healthy people has not yet been scientifically recorded. Therefore we have created a short anonymous survey and ask you to tell us about your experience with vaccination. You can also take part in the survey if you cannot or do not want to be vaccinated or if you have contracted COVID-19. In doing so, you help to create a meaningful database to further improve the care of AA / PNH patients in the future.

We make the results of the survey available to science free of charge. Participating patients can also receive the evaluations on request.

The survey and further information can be found under the following link: https://aa-pnh.org/umfragen/irvap/de/ and in English at https://aa-pnh.org/umfragen/irvap/en/

Thank you for your help!

Survey on COVID-19 at AA and PNH

Spritze mit Fläschchen für Impfung © weyo

Dear AA / PNH fellow patients,

Some time ago we informed you about a survey initiated by our association in cooperation with the lichter zellen foundation . The purpose of this survey is to record the effects that COVID-19 vaccination has on our patient group. At the same time, AA / PNH patients who have recovered from a COVID-19 disease can also take part in the survey.

We were able to make the survey known around the world, among other things, through the global network PNH Global Alliance . In the meantime, 72 patients from Germany, Austria and Switzerland and 12 patients from Europe have taken part in our survey. We are particularly pleased about the participation of 8 patients so far from Australia, Iran, Canada, Turkey and the USA.

This gives us the chance to make the results of this survey available to science in order to enable better care for our relatively small patient group in the future.

In order to achieve meaningful results, we are still dependent on the active participation of AA / PNH patients. Please pay attention to our survey and take a few minutes to answer the anonymous survey. You are helping all AA and PNH patients.

WEITER

Collection of COVID-19 vaccination data from AA / PNH patients

Dear fellow AA and PNH patients,

Some time ago the first AA / PNH patients received their COVID-19 vaccination. But what effects do the vaccination or the COVID-19 disease have on our relatively small group of patients? In order to collect knowledge about this and to be able to make the results of science available for better care in the future, we are carrying out an international survey in cooperation with the Lichter Zellen foundation . The data is collected completely anonymously, i.e. without any personal or personally identifiable information. There is no way that your data can be assigned to you afterwards.

If you would like to receive further information or results about this survey or the AA / PNH register from us, you can enter your e-mail address after the survey. This is saved separately from the survey data.

The survey can be accessed under the following link: https://aa-pnh.org/umfragen/irvap/de/

Thank you in advance for your participation! You are helping all AA and PNH patients.

We would be delighted if, after answering the survey, you would inform other AA / PNH patients about it. If you have any questions or suggestions, please contact us by email at info (at) aa-pnh.de .

RECOMMENDATIONS OF THE ULM UNIVERSITY HOSPITAL ON COVID-19 VACCINATION IN AA/PNH

A few weeks ago, vaccinations against the SARS-CoV-2 virus began in Germany. As announced in our February virtual group meeting, the Ulm University Hospital, as one of the most important AA/PNH centres in Germany, has now published a recommendation letter (German) on this topic. If you need assistance with details contained in the recommendation letter please email us at info(at)aa-pnh.org or give us a call: +49 30 549094080. We briefly summarise the most important contents for you below:WEITER

Survey by the Aachen University Hospital on the consequences of the COVID-19 pandemic for AA / PNH patients

Since the current COVID-19 pandemic creates a lot of unrest and new questions arise every day, the University Clinic Aachen, under the direction of Priv.-Doz. Dr. Fabian Beier developed a survey (so-called Soci-Survey). In doing so, the clinic would also like to meet the wishes of many patients to collect and evaluate data on the current COVID-19 situation in order to learn about the effects of the pandemic on personal life and medical care as well as knowledge of its course and frequency of COVID-19 especially in patients with PNH and / or AA or dyskeratosis congenita (DKC).WEITER

Information on the COVID-19 pandemic for AA and PNH patients

 

UPDATE - the letter has been updated:

 

Letter of recommendation on Corona at AA and PNH as of March 25, 2020 (2 MB)

 

Miss Dr. Höchsmann from the center in Ulm, which specialises in AA and PNH, has put together information and assistance in dealing with the COVID-19 pandemic. Please follow the instructions and stay as healthy as possible!

 

Note: The websites listed in the letter are not linked, they follow here:

WEITER
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