Tag Archive for: survey

Global Cushing’s Quality of Life Survey by CSRF – Invitation to participate

The Cushing’s Support and Research Foundation (CSRF) and the World Alliance of Pituitary Organizations (WAPO) are conducting a global survey to gather patient opinions about quality of life and the journey with Cushing’s. We understand that living with Cushing’s poses numerous challenges, and we deeply appreciate your willingness to share your experiences.

If you are 18 years of age or older and have been diagnosed with Cushing’s, you qualify to participate in this project.  If you do not currently fit this criteria, we will have additional opportunities in the future.

By participating in this survey, you are contributing to a collective effort that aims to enhance understanding, promote better care, and improve the lives of individuals affected by this condition worldwide. Findings will be reported at the World Alliance of Pituitary Organizations Summit in Buenos Aires, Argentina on October 7, 2023. Afterwards, a detailed report will be shared with all participating individuals and organizations, and there will be additional opportunities to share over the next year at conferences.

Your voice matters, and we are grateful for your time and input.  To learn more about this project and to take the survey yourself, please visit http://www.csrf.net/2023globalsurvey. The survey is available in English, French, and Spanish.  The survey opens on Monday, August 28, and will remain open until midnight EST on September 11 for this specific collection of data to present.
Afterwards, the survey will be open again.

Learn more about
CSRF at http://www.csrf.net and
WAPO at http://www.wapo.org

Doctors, teach your adrenal insufficiency patients well …

In the autumn of 2021, it appeared to be a need among the participants in the ENDO-ERN cooperation(*), especially within the Main Thematic Group of the Adrenal glands, to know how in Europe the well-known adrenal stress schedule(**) is used in daily life of the adrenal patients.
Also, we wanted to know in how many cases the right recommended emergency measures can be taken by patients and their carers, relatives in the various countries.
A survey for this purpose was then sent out in collaboration with Endo-ERN, AdrenalNET and the Dutch Adrenal Society NVACP across Europe in the participating European countries.
The survey was sent to nearly 300 people. The survey was completed by 183 people, the results of which gave us all quite a wake-up call.
The results, as shown on a poster at the Milan ECE meeting in May 2022, were shocking. This result gave energy to the authors to start writing the article below.
We wish you much reading pleasure and hope that you, too, will ensure that those receiving cortisone substitution are trained in a timely manner, thanks in part to you, to avoid getting into a dangerous crisis. After all, through proper training and an appropriate action by the patient and his/her family, colleagues & friends, it is no longer normal anno 2023, to bring Adrenal patients into danger.

Johan G. BEUN

Doctors teach your patients well – JB et all

(*) https://endo-ern.eu/specific-expertise/adrenal/

(**) https://adrenals.eu/stress-instructions/

Tag Archive for: survey

Adrenal Insufficiency – Study: Significant risk of COVID-19 and related-hospitalization among patients with adrenal insufficiency: A large multinational survey

Manuscript Yedinak. Ross. fendo-13-1042119