External research study: Adherence to weekly growth hormone treatment
A research team at King’s College London are running a study on adherence to weekly growth hormone treatment, aimed at children aged 3-16 years old who have Growth Hormone Deficiency and have weekly growth hormone treatment.
Contact: [email protected]Â and see the poster below for further details.
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.Â
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].
External research study: How do parents of children with long term health conditions experience online peer support?
Please see the summary of the study below, and see the full information here.
For more information or to take part email [email protected].
Study open until the end of March 2025.
Paid External Research Participation Opportunity
MindSight Research are looking to invite people to participate in a research study which is looking at an injection device to administer medication to people diagnosed with one of the following conditions:
• Growth Hormone Deficiency (GHD)
• Turner Syndrome (TS)
• Small for Gestational Age (SGA)
• Prader-Willi Syndrome (PWS)
• Idiopathic Short Stature (ISS)
• Chronic Renal Insufficiency (CRI)
This is study will hopefully lead to better access to the most suitable medical devices for administering Growth Hormone medication.
What would participation involve?
We would be looking for people to participant in a 90 minute in person one to one session, where they will review a device and its instructions and asked specific questions around it. They will be compensated for their time.
Who are we looking to speak to?
People who are aged 18+ and have administered injectable medication for someone with one of the following conditions:
• Growth Hormone Deficiency (GHD)
• Turner’s Syndrome (TS)
• Small for Gestational Age (SGA)
• Prader-Willi Syndrome (PWS)
• Idiopathic Short Stature (ISS)
• Chronic Renal Insufficiency (CRI)
Adolescents aged 12-17 who have been diagnosed with one of the above conditions and have administered injectable medication to themselves (they would attend with a parent/guardian as a chaperone).
Compensation for participation
Participants in this study would receive a monetary amount for their time and contribution. This would be £150 for 90 minutes. This would be paid via bank transfer.
For adolescents, this is the total amount for their participation and chaperone.
This is inclusive of basic travel costs, however we can review this on an individual basis for those travelling further afield.
The organisers will also kindly donate £20 to the CGF where participants note our charity name for where you heard about this research opportunity.
Dates
The dates we are currently looking at are: 22nd July 2024 – 3rd August.
Locations
We have study days booked in the following locations, however if you are interested in participation and live outside of these, please do get in touch as we will be considering additional locations dependent on interest.
London
Birmingham
Bristol
Manchester
Glasgow
How to apply?
If you would like to register your interest to participate please follow the below link: https://eu.panelfox.io/s/9b2ffca0-fc65-4b4b-861d-d3d5dc98e85f
You can also email us: [email protected]
Or if you would prefer to discuss on the phone you can can call us on 0117 462 4700
Mindsight Research have shared the below flyer.
They are looking to speak with children and their parent/guardian who may be interested in taking part in this face to face usability study (a usability study involves participants reading and following a set of instructions for a medical device and providing their feedback).
They want to ensure that a new information leaflet can be understood and followed by everyone, including children of all ages and reading ability. This is not a clinical study and you nor your child would be required to take any medication, just to give your time and opinions.
Intelligent Fieldwork would like to speak to children age 7-12 years (or those aged 6 who are turning 7 this summer) who use an injection device to administer medication to treat a health condition.
Interviews are taking place across the UK and will last for 60-minutes for which participants will receive £100. The accompanying parent/guardian will receive a £30 chaperone fee, and there is a small travel contingency for people that need to travel.
The organisers will also kindly donate £20 to the CGF where participants note our charity name in the ‘where did you hear about this study’ box in the questionnaire.
To find out more and to take part please email [email protected] or visit the questionnaire here.
Intelligent Fieldwork have also shared the below information flyer.
