‘Growth Matters’ Podcast Launched

‘Growth Matters’ Podcast Launched

‘Growth Matters’ – podcast launched

We are delighted to announce the launch of our very own podcast, which we have appropriately called ‘Growth Matters’.

Growth Matters is a monthly ‘chat magazine’ that will bring latest news, research updates, details of growth conditions, personal experiences of living with rare conditions, interviews with health professionals and so much more. As the series progresses, it will build into a library of invaluable information for parents, friends and those with a growth condition. It will also develop to be a useful learning tool for health professionals, and schools, and other interested parties who want to find out more about the conditions we support.

You can see why we are so excited!

The podcasts will be available from our BuzzSprout web page, and you will also be able to find them through podcast apps.

The all important link is:

‘Growth Matters’

Head over and start listening now!

If you have any feedback on the podcast, we would love to hear it. Also, if you would like to tell your story through one of the casts, or you are a health professional who would like to be interviewed then please also get in touch: info@childgrowthfoundation.org

 

Particpants Needed for Growth Hormone Therapy Study

Particpants Needed for Growth Hormone Therapy Study

Particpants Needed for Injectable Growth Hormone Therapy Research

A UK based market research agency called Bryter is looking for UK residents to take part in research studies on the subject of injectable human growth hormone therapy.

They have two studies which will be running in the early part of 2020:

Study 1:

A two week study where participants will download a user friendly App to their smartphone through which they can share their experiences of using injectable human growth hormone therapy. This study is open to parents and caregivers of children using this therapy as well as patients that are managing their own treatment The objective of this study is to gain some insights about the patients’ treatment routines and views of treatments available. There will be a series of questions and short tasks that can be answered using text, pictures or videos and won’t require more than about 10-minutes commitment per day at a time that is convenient. Some participants will then be invited to take part in a follow up in home interview lasting 120-minutes, parts of which will be filmed

Participants will be offered an incentive of £150 as a thank you for completing the app based survey, paid via Amazon voucher or bank transfer. Those participating in the follow up in home interview will receive a further £100. 10% of the incentive (or more if they wish) will be donated to your choice of our registered health charities.

Study 2:

An online survey, roughly 20 minutes in length on the subject of using injectable human growth hormone therapy. This study is open to parents and caregivers of children using this therapy as well as patients that are managing their own treatment Participants would complete the survey on a computer or other connected device.

Participants will be offered an incentive of £30 as a thank you for completing the survey, paid via Amazon voucher or bank transfer. 10% of the incentive (or more if they wish) will be donated to your choice of our registered health charities.

What to do if you are interested in taking part?

To check if you are eligible to participate in one or more of these studies, please click on the link below which will direct you to an online questionnaire where you will answer some questions to test for your suitability to participate. A member of the research team will then contact you with more details:

Eligibility Survey

If you have any questions or concerns at this stage you can contact the Bryter research team direct at the following email address: emelia.smith@bryter-uk.com 

Or you can contact the Child Growth Foundation jenny.child@childgrowthfoundation.org

If you do take part in the studies, could you please mention the Child Growth Foundation, thank you.

Particpants Needed for Growth Hormone Therapy Study

Participants Needed for Pituitary Conditions Study

Understanding the Needs of Children with Pituitary Conditions

Dr Alyson Norman from the University of Plymouth and Dr Sue Jackson from the University of the West of England are looking for participants in a study of children and young people with pituitary conditions.

Primarily, the research aims to investigate the psychological and social functioning of children who have a pituitary condition. The study is focused on individual’s aged between 10-25 and their experiences socially, mentally and physically, their level of decision making in their care and their transition from paediatric based care to adult care. They hope that by conducting this research they will gain an insight into the difficulties that can occur when living with a pituitary condition, help health professionals to better understand their patient’s needs and guide intervention development. They also hope that the information they gain from this research will help young individuals living with a pituitary condition to feel they are able to self-manage their condition, feel empowered and in charge of themselves for the rest of their lives.

If you or your child would be interested in taking part in this study, please contact Dr Norman for more information at:  alyson.norman@plymouth.ac.uk.

Particpants Needed for Growth Hormone Therapy Study

Recruits Needed for Sensory Profile Study

New project: Sensory profiles in rare genetic syndromes

Researchers at the University of SheffieldWe are currently recruiting parents/caregivers of children (aged 3 – 14 years) with a diagnosis of either Sotos syndrome or Tatton-Brown Rahman syndrome (TBRS) to take part in an exciting new research study.

Their previous research with these syndromes has indicated that sensory processing difficulties may be problematic for some children but this has not yet been explored in detail. They are therefore interested in finding out whether there are specific aspects of sensory processing that are common in either of these syndromes and whether these may be associated with other behaviours, such as anxiety and autistic traits. They hope that this research will provide important information regarding sensory processing difficulties in both Sotos syndrome and TBRS which can then be used to help reduce and manage these difficulties, as well as identifying specific behaviours which may occur as a result of sensory processing difficulties.

Taking part in the study involves completing a few questionnaires regarding your child’s sensory processing and associated behaviours. These can either be completed online or hard copies can be sent via the post.

All individuals who participate in the study will receive individualised feedback regarding their child’s sensory profile. If anyone is interested in finding out more about the study or would like to participate, please get in touch with Chloe Lane: chloe.lane@sheffield.ac.uk

New Blue Badge Rules

New Blue Badge Rules

New Blue Badge rules in England to came into force on 30 August 2019

Last year the government announced its intention to expand the blue badge rules in England to make it easier for people with hidden disabilities such as autism to qualify. However, no date was provided for these new rules coming into force.
Now the government has published regulations confirming that these new rules will start to apply from the 30 August 2019.
As a result of the consultation, automatic entitlement to the Blue Badge will be extended to those in England who score 10 points under the Personal Independence Payment (PIP) mobility test of being “unable to undertake any journey because it would cause overwhelming psychological distress to the claimant”.

Entitlement will also be extended to those who are assessed as having an enduring and substantial difficulty which causes them during a journey to either:

  • Be unable to walk.
  • Experience very considerable difficulty whilst walking, which may include very considerable psychological distress.
  • Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

The new rules also allow local authorities to use a broader range of professionals to assess the nature and effects of an applicant’s disability on their ability to get around.

Derek Sinclair, one of Contact’s Family Finance advisers, said: “We get many calls to our helpline about Blue Badge entitlement and lots of parents have been left frustrated by the absence of any start date for the new rules.

“The current rules make it difficult for many people with conditions such as autism or learning difficulties to qualify, so many families will eagerly await the new rules in August opening up entitlement for many more children and adults with hidden disabilities.”
You can find out more about the different Blue Badge rules in the different nations on the Contact website.