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External paid research study – GHD patient and caregiver experience

External paid research study – GHD patient and caregiver experience

by | Mar 10, 2025 | Growth Hormone Deficiency, News, Opportunities: external studies, surveys and research projects

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].

External research study: How do parents of children with long term health conditions experience online peer support?

External research study: How do parents of children with long term health conditions experience online peer support?

by | Mar 3, 2025 | News, Opportunities: external studies, surveys and research projects

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.

Growth Hormone Injection Device – Paid External Research Study

Growth Hormone Injection Device – Paid External Research Study

by | Jun 17, 2024 | News, Opportunities: external studies, surveys and research projects, Research

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.

 

External paid study opportunity: For children who use an injection device to administer medication to treat a health condition

External paid study opportunity: For children who use an injection device to administer medication to treat a health condition

by | May 23, 2024 | News, Opportunities: external studies, surveys and research projects

Intelligent Fieldwork are working with their client, a health communications company, on a study for children who use an injection device to administer medication to treat a health condition.

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.

More details

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 take part

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.

 

Research project: What are the neurodevelopmental, behaviour and feeding issues in children and young people with Silver-Russell syndrome?

Research project: What are the neurodevelopmental, behaviour and feeding issues in children and young people with Silver-Russell syndrome?

by | May 22, 2024 | News, Opportunities: external studies, surveys and research projects, Silver-Russell Syndrome

Researchers at Aston University are working with Birmingham Women’s and Children’s Hospital to better understand the needs of children and young people with Silver-Russell syndrome.

 

The research team are inviting parents/carers of children aged 3-16 years with a diagnosis of Silver-Russell syndrome (SRS) to take part in a questionnaire study about neurodevelopmental, behavioural, and feeding characteristics of SRS.

 
 This study will help to better understand the specific needs of children with SRS, so that children and families can be better supported. All families that take part will receive a £10 voucher as a thank you for their time.

 

 

How can families become involved?


If you would like to take part in the study, please express an interest by:

• Emailing: Courtney Greenhill (Research Assistant) – [email protected]
• Telephoning and leaving a message: (+0044) 0121 204 4307
 
You can then either request that more information is sent to you by post, or you can be given a link to a study where you can read more about the study and complete it online.
 
Registering an interest does not commit you to taking part. You will have a chance to make your decision about getting involved once you have read the information sheets. 
 

Who are the researchers working on this project? 

  
This research is being led by Prof Jackie Blissett at Aston University. Members of the research team at Aston University, Birmingham Women’s and Children’s Hospital and the University of Birmingham are shown below!
Thank you very much for your interest in our work!
GENROC study: spring update

GENROC study: spring update

by | Apr 1, 2024 | News, Opportunities: external studies, surveys and research projects

The GenROC (Genetic Rare conditions Observational Cohort) study has now been open for 9 months and is open at 21 NHS sites across the UK. 117 families have all of their initial questionnaires completed and another 100 are in the early stages of joining the study. However, that means they still have lots of spaces available for more families to join as they are aiming for a total of 500.

One of the specific aims in the study is to better understand the growth and development of children with these rare conditions and they are particularly looking at some new methods to devise growth curves that are specific to the genetic condition. This will be really helpful for families and doctors.

To be eligible you need to live in the UK, your child needs to be under 16 and your child needs to have an eligible genetic condition (and can only have one genetic condition). The list of conditions can be easily searched by clicking here.

To enrol go to https://redcap.link/GENROC.

The GenROC team have a web page here. They are also on Facebook here or you can email them at [email protected].

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Read the previous GENROC study post here.