Research Opportunity: Self-management for people with adrenal insufficiency

Do you have adrenal insufficiency? Dr Sofia Llahana, Senior Lecturer and Consultant Nurse, is leading an international study involving patients with adrenal insufficiency and their families and is inviting you to take part in this important research.

The aim of the study is to investigate the factors that influence the patients’ ability to self-manage their condition, with the objective to develop a Position Statement on standards of patient education and support services for patients with adrenal insufficiency and their families.

The study has been endorsed by the Society for Endocrinology and the European Society for Endocrinology and we are delighted to say is in part funded by the Addison’s Disease Self Help Group (ADSHG) research grants.

Read our 'Meet the Researcher' article with Dr Llahana here

In this first stage of the study, Dr Llahana is inviting patients with adrenal insufficiency on steroid replacement and family members to take part in virtual group discussions via Zoom lasting up to an hour to share their experience of managing their condition. Participants will receive a £20 high street voucher as a token of appreciation for their help.

UPDATE (22/09/2021):

Thank you for the overwhelmingly positive response to this research study! This emphasises the need to better understand the factors that influence self-management, and we are most grateful of your feedback. This stage of the study is now closed for UK residents, but it is still open for participants from Europe, Australia and North America (USA and Canada). Dr Llahana will contact everyone who expressed an interest to participate in the study with further details in the next few days.

Who can take part:

People who have adrenal insufficiency caused by Addison’s disease, pituitary conditions, CAH or other causes and are on steroid replacement, e.g. daily Hydrocortisone tablets.
A family member of a person with adrenal insufficiency
People who live in Europe, Australia and North America (USA and Canada), but you need to be able to communicate in English to participate in the group discussion.
The study is temporarily closed to UK residents as participants spaces for UK residents have been filled. When the first stage of the study is completed and more spaces are available, it will open again for UK residents. Thank you for your interest!

How to take part:

Follow the link or the QR code below to find out more about the study and to take part.
Contact Dr Sofia Llahana on e-mail: [email protected]

Click to take part in the study

Thank you Dr Sofia Llahana for researching further into this rare area of endocrine research for the benefit of those living with Addison’s and adrenal insufficiency.

The ADSHG receives regular approaches from researchers who are seeking our assistance with recruiting participants for their scientific projects. These approaches range from requests to publicise online questionnaires, to requests to assist with long-term clinical trials.

Click here to more read more about our research application process

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