Growth Hormone Injection Device – Paid External Research Study

Growth Hormone Injection Device – Paid External Research Study

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

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?

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

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].

Read the previous GENROC study post here

Overgrowth Syndromes Alliance – Patient Priority Survey

Overgrowth Syndromes Alliance – Patient Priority Survey

Overgrowth Syndromes Alliance

The Overgrowth Syndromes Alliance (OSA) has been recently formed, and we’re really pleased that Child Growth Foundation are involved in this international alliance.

OSA Patient Priority Survey

The OSA developed a patient priority survey to gather the most important needs of their communities to share with researchers.

The data collected from the OSA Patient Priorities Survey was presented at the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington DC, October 15th-17th October 2023. Thank you for making your voices heard. You can view the 2023 NORD OSA Patient Priorities Poster here.

This survey will be open indefinitely and the OSA will revisit the responses annually. To take part in the survey click here.

OSA Scientific Meeting

The first OSA Scientific Meeting is being held in early 2024. Patient priorities across Overgrowth-Intellectual Disability (OGID) syndromes (Malan, Tatton-Brown Rahman, Sotos, Weaver, PIK3CA and Smith-Kingsmore) will be shared at this meeting. Researchers, clinicians and industry partners, all with an interest in overgrowth, will be in attendance.

The goal of the OSA is to promote patient-centred research that is of the greatest benefit to the larger OGID community.

StratifID – Stratifying Imprinting Disorders

StratifID – Stratifying Imprinting Disorders

StratifID – Stratifying Imprinting Disorders

Justin Davies, Gabriella Gazdagh, Deborah Mackay and Karen Temple

StratifID is the latest study by the Southampton Imprinting Research team and is funded by the Medical Research Council. The study aims to understand how a type of genetic change (multi-locus imprinting disturbance) affects growth, development and health in children with Silver-Russell Syndrome (SRS) and and other imprinting disorders.

We will stratify people with SRS, and other imprinting disorders, according to whether or not this genetic change is present and we will investigate the health consequences. This information will help medical teams to predict who will require specific interventions; medical therapy, nutrition, educational support etc, so we can optimise health in people with SRS over their lifetime. This could lead to a step change in personalised medicine for people with SRS.

Background

Our bodies are formed using the genetic ‘instruction book’ made of DNA, which we inherit from our parents. From our eyes to our toenails, every cell in our bodies contains the same DNA – but every cell uses it differently. DNA changes can cause genetic disorders that make people unwell from their birth. But some rare disorders aren’t caused by changes in DNA itself, but in how that DNA is used; these are called imprinting disorders.
SRS is an imprinting disorder that happens when DNA that should be used from only one parent’s instructions, is instead read from both parents’ copies, or neither. People with SRS have reduced growth both before and after birth, so they need a care plan that fits them and helps them to thrive.
But families and doctors know that one plan doesn’t fit all children with SRS; children vary in their growth, appetite, response to Growth Hormone, and many other ways, and we suspect that imprinting disturbances, more complex than currently recognised, underlie part of this variation.

What the team will do

We will recruit children with molecularly diagnosed SRS, and another imprinting disorder Beckwith-Wiedemann Syndrome. For each child we will create a detailed picture of their growth and development, and precisely map out the changes in how their DNA is used, and measure their metabolism using state-of-the-art tests (in a simple pee sample!). We will find patterns that link their imprinting disturbance with their clinical progress. If we stratify imprinting disturbances in this way, we can predict what management will be best for different people.

If you want to know more

The team behind this study would love to hear from families who have a child (ideally under ten years old) with molecularly diagnosed imprinting disturbances. The study will run for three years from September 2023. Most, but not all, children with molecular SRS will be eligible for the study. If you would like to learn more, please email [email protected] with the emailed subject ‘StratifID’.

Child Growth Foundation

c/o Kinnair Associates Limited
Aston House
Redburn Road
Newcastle upon Tyne
NE5 1NB

Social Media

E-News

Copyright 2024 Child Growth Foundation
Charity registered in England & Wales | Charity number: 1172807 | Company number: CE010204.
Privacy Policy | Cookies | Compliments & Complaints