WAPO 2022 Webinars

In 2021 the WAPO Board discussed the importance to have a library of educational videos on the WAPO website. The idea behind this is the library should focus on more uncommon topics related to pituitary disorders. Besides this, not everyone is interested to learn by reading books or texts. And many people living with a pituitary disorder might have to deal with concentration or sight issues.

We were very proud to launch the first session, of the WAPO 2022 Webinar Series on February 18th with a presentation by Dr Michael Cusimano (neuro-surgeon) from St. Michael’s University Hospital, Toronto, Canada.
The presentation on ‘How to earlier diagnose Acromegaly’ was the introduction to an international research study which Dr Cusimano and his Research Team are working on. The goal of the study is to diagnose Acromegaly patients earlier, and to prevent them from suffering too long.
The project’s preparations started 2 years ago, with strong engagement by national and international Acromegaly patient advocacies, e.g. Acromegaly Canada, Acromegaly Community (US), Pituitary Foundation UK and the World Alliance of Pituitary Organizations (WAPO), with regular online meetings and reviewing of materials.

Dr Cusimano presented on Acromegaly and the long time it takes till patients are diagnosed with Acromegaly, an average of about 10.5 years. He also spoke about the idea behind the study, the method, and expectations. At the end of his presentation, Dr Cusimano asked the audience to support the research! This can be done by completing a survey on the Quality of Life, and sharing photos of their face, hands and/or feet, to create an Acromegaly database. This database is safe and protected, and only accessible for a limited team of researchers in the project.

To one of the questions in the Q&A session, Dr Cusimano replied that the study outcomes possibly will support – at a later stage – the earlier diagnosis for Cushing’s and other pituitary disorders as well.
To help promote the study and share your photos, we invite you to convey the information in this blog with your pituitary community, patients, carers, Health Care Professionals and Nurses, to make the study as effective as possible.

If you were not able to attend the webinar, please click here for the webinar recordings:

On March 17th WAPO held its second webinar episode entitled ‘Plain Language Summaries’ presented by Elena Conroy, Senior Managing Editor at Sage Publishing (UK).

Plain Language Summaries (PLS) have become a rather hot topic in the past couple of years, even more so since the Regulation (EU) No. 536/2014 came into effect in October 2021. Although this process is specifically mandatory for clinical trial sponsors, this practice is gradually being implemented in several online journals that have a much wider audience and subject range.

As Elena explained during her presentation, there are several valuable aspects in the use of PLSs, especially if we consider different stakeholders:

  • As a patient advocate or patient organization, it is essential for patient involvement, education, and empowerment;
  • As publishers, it provides increased accessibility to the published research and data;
  • As an author, it is an effective way to increase outreach and visibility of their research.

Well, we know who is involved, but what exactly do we mean when we speak of Lay summaries? Elena was able to explain this very well during here presentation and as a global patient organization alliance, we strongly believe in patient engagement as well as supporting and sharing research results.

In a nutshell, PLSs:

  • Describe research findings using language and terms that are understandable to non-specialized readers.
  • The summaries originate from reliable, peer-reviewed journal articles or congress posters/presentations.
  • Enable a much wider variety of people to not only have access to information, but also be able to understand and share it among the community. This includes caregivers, non-specialist HCPs, policymakers, friends, family members and many more.

The presentation was followed by a lively Q&A as well as a short ‘practical’ exercise where participants were asked to identify more challenging terminology or acronyms from an original excerpt of an article, compared to one that had been adapted and simplified. Surprisingly, the participants identified even more ways to improve the draft lay summary.
Overall, we believe this was a very well presented and active webinar and do hope you will enjoy the recording:

Don’t forget our upcoming webinar with Dr. Susan Webb on April 27th at 4 pm CET. Dr Webb will help us understand how innovative technologies and AI can benefit long-term outcomes in pituitary diseases.
If you haven’t already registered to the webinar series, click here.

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