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External paid research study – GHD patient and caregiver experience

External paid research study – GHD patient and caregiver experience

55LDA Research are an independent medical research company working on behalf of a pharmaceutical company  to support a piece of market research designed to define ways to support both people living with and caregivers of people living with Growth Hormone Disorders (GHD). The aim of the research is to gain more insight into how this condition affects their daily life and to sense check potential patient support options to ensure our client is able to provide the best patient support possible, particularly for the adolescent population.

To this end, they are seeking to speak with 6 adolescent patients and 4 adult caregivers of adolescent and juvenile patients with GHD (2 caregivers of patients under 10, 2 caregivers of adolescent patients). Adolescent participants under the age of 16 will need to be accompanied during the interview by a responsible adult, who will not participate in the interview but who needs to be present in a supervisory capacity.

Participation in the research will involve patients / caregivers taking part in 60 minute remote interview via Zoom or similar. All answers are strictly confidential and the study is non-promotional; anonymity will be kept throughout. Patient names will not be revealed to our client and will not be made available publicly, so patients can feel free to speak their minds.

Adolescent participants and caregiver participants who complete the 60 minute interview will be reimbursed £100 for their time. Adult supervisors of adolescent patients will be reimbursed £50 for accompanying their minor during the interview (‘accompanying’ in this sense will entail being present in the room whilst the 60 minute remote interview is taking place). The organisers will also kindly donate £50 to the CGF where participants note our charity name. 

The research has been designed in accordance with MRS and BHBIA standards and participants’ personal data will be protected under the GDPR and no personal identifiable data will be shared with the BHF.

For anyone interested in participating, please use this link to complete some brief screening questions to ensure that the study is suitable for you, or contact Rachel Barnes at LDA Research at [email protected].

European Hormone Day

European Hormone Day

Today is European Hormone Day. A dedicated day bringing together the European endocrine community to raise awareness.

You can access our information about conditions we support, including Growth Hormone Deficiency, Primary IGF-1 Deficiency, Hypopituitarism and Precocious Puberty, here on our website where we have a range of information pages and booklets, along with some great video resources from our Growth Nurse Specialist Sally over on our YouTube channel www.youtube.com/@childgrowthfoundation.

Need to speak to someone? We are here to listen and support you. Call our support line on 020 8995 0257 or email us at [email protected].

For more support and resources you can visit ‘You and your hormones‘, an online education resource from the Society for Endocrinology. You can also find out about other European Hormone Day plans on the European Society of Endocrinology website.