An opportunity is available to be involved in a PPI (Patient & Public Involvement) research group, to help shape future research into imaging techniques for pituitary disease. Currently, the NHS uses techniques like MRIs to be able to identify pituitary adenomas. This group is being created to help improve research in this area by looking into techniques such as advanced MRIs and innovative nuclear medicine.

Dr Russel Senanayake, a consultant endocrinologist based at Guy's & St Thomas' NHS Foundation Trust, is looking to recruit up to 8 pituitary patients to become active members of this PPI research group.

What does this group aim to do?

The aim of this group is to help improve future research into pituitary adenoma imaging techniques. By having better technologies to detect pituitary adenomas, we can hopefully diagnose and treat them sooner and improve the experience of patients undergoing diagnosis.

The purpose of this group will be to:

• Provide feedback on research grant proposals, including reading the 'lay summary' of the research to ensure that it is understandable to the general patient population
• Help shape the way that research grants through providing feedback on the grants
• Help shape how research studies involving pituitary patients are designed, by providing lived experience insights
• Provide ideas for future pituitary research and be actively involved in developing these ideas

What will being a group member involve?

The group will aim to meet at least once a year, in London (likely at a conference site at Guy's and St Thomas' Hospital or King's College London). There may also be work required outside of in-person meetings, but you will be compensated for this.

By being involved, you will receive:

• All expenses fully paid, including travel, compensation for time spent outside of meetings to review research proposals, necessary childcare expenses and meals/refreshments for in-person meetings
• The chance to gain research experience and be part of developing new forms of pituitary imaging, along with new medical and surgical treatments for pituitary conditions
• Active involvement in the design of grant proposals by volunteering to be a patient co-applicant. You will be named on the grant proposal as part of this

Who can apply?

You don't need to have any previous experience of research to be involved in this group.

If you are interested in being part of this research, please complete this online form. It should take no longer than 10 minutes to complete. If you have any questions about this research, please email [email protected]. Alternatively you can also use the 'Any questions' section of the online form to submit your queries.

We are looking for participants to share their stories and experiences as part of a study into the affects of a craniopharyngioma on hunger and obesity.*

The study aims to map the patient journey of anyone affected by craniopharyngiomas. Mapping a patient journey involves creating a detailed description of you or your family's experiences, such as your routines and challenges and how you may deal with them. As an example, the map of the patient journey may aim to describe the impact of constant hunger on your eating habits and weight while being at school or work, during social situations or during a visit to the doctor.

The research will be carried out by Teun Schutte, with the help of The Pituitary Foundation. Below, you can find more information about the study and what it would involve.

Description of a patient journey: Coping with hunger and obesity due to a craniopharyngioma

What is it about?

At the request of Rhythm Pharmaceuticals, the researcher will map the lives of people who have constant hunger (hyperphagia) or weight problems as a result of a craniopharyngioma or its treatment. They are looking for five or more individuals (or families) who would like to share their experiences. This research will be repeated in a number of other countries, so that a good picture emerges.

The insights are then brought together with text and images in a so-called 'Patient Journey'. Research will be completed in collaboration with doctors and a patient organisation, The Dutch Pituitary Foundation.

What is the aim of the research?

To better understand the daily experiences of anyone affected by craniopharyngiomas and the experiences of their families, and to create research that can help others in this situation. Any insights gathered from this research will be shared anonymously with participants, doctors and groups that support people affected.

What is a 'Patient Journey'?

Think of it as the story of your daily life. This could include visits to your doctor or ways you alter your diet, but it could also include everything that is important or normal to you, such as hobbies, school or work, and friends.

By sharing your story, you'll help to:

• Identify common problems that patients face and ways to resolve them
• Educate others on what you are going through, such as your teachers or doctors, so that they can help you better
• Create products and treatments that really help, through providing valuable insight to companies regarding this
• Advise those who may be new to these challenges or routines, so they know what to expect and can better prepare themselves for living with this condition
• Help others who may relate to your experiences but may still be searching for a diagnosis of their own

In short, there are lots of reasons to share your story. If you would like to be involved, please get in touch to set up an informal interview. A call may last between 60 and 90 minutes. You can stop the call at any time, if you are feeling tired or no longer wish to participate.

Please note the following:

• Caregivers: You are allowed to talk to us alone or together with the person you are caring for. We also want to speak with you alone for about 30 minutes
• Children (4-12): You can join too! Please check with your caregiver first
• Teens (12+): You can talk to us on your own, or together with a parent/guardian. Whatever you prefer best
• Adults: You can do it alone, or with someone with whom you feel comfortable

Don't worry, it's just a conversation. This is for research only and you can stop at any time. There are no right or wrong answers, we just want to hear your experiences. Moreover, your privacy is of utmost importance. All names and details will be kept confidential – only the patient organisation and the researcher (Teun Schutte) will know who you are.

Introduction to the researcher

'My name is Teun Schutte and I have been working in healthcare for over 25 years. My research helps companies to better understand what life is like for people with different health conditions. This way, they can create products that really help.'

Want to share your story?

Do you want to participate, or are you curious? Please contact [email protected].

*Please note, if you recognise yourself as experiencing hunger and/or obesity due to hypothalamus damage but it has arisen in a different way for you, we would also love to hear from you. Please do get in touch.