Managing Growth Disorders Webinar

Managing growth disorders: integrating technology into a personalised approach

Webinar: Tuesday 21st May

This is an expert-led live webinar discussing non-adherence to GH therapy, why this is a problem and what interventions can promote adherence for children and their families. Specialists will be presenting and debating on barriers to effective management of growth disorders and which tools are available to implement to improve short- and long-term outcomes.

This webinar is suitable for, but not limed to, clinical paediatric endocrinologists, clinical adult endocrinologists, paediatric endocrine nurses, clinical psychologists, and all other healthcare professionals interested in the management of growth disorders.

To register your place follow the link below:

Webinar: Managing Growth Disorders

King’s College London Research Project

King’s College London Research Project

Understanding and Improving Treatment Non-Adherence in Paediatric Growth Hormone Deficiency

by Selina Graham
PhD Researcher
Clinical Practice & Medication Use Research Group
Institute of Pharmaceutical Science
King’s College London

Our team here at King’s College London are very keen to further understand the complex issue of treatment non-adherence in paediatric Growth Hormone Deficiency.

The primary aim of recombinant growth hormone treatment during childhood and adolescence is to accelerate linear growth and return the child to the normal growth curve in order for them to attain a ‘normal’ or ‘near-normal’ final adult height. Despite the benefits of growth hormone treatment on long-term health outcomes, evidence has shown that many children with Growth Hormone Deficiency still in fact, fail to achieve their target genetic adult height. This has been largely attributed to what is termed ‘treatment non-adherence’. As growth hormone is administered via a daily subcutaneous injection, treatment non-adherence can take many forms, from taking a smaller dose than prescribed, missing an occasional dose, to taking few or no doses at all.
To develop our understanding, we wish to gain a better insight into the views and experiences of parents/caregivers with regards to their child’s condition and treatment, via two studies which form part of a wider PhD project. We are interested in involving parents/caregivers of children 12 years of age and under, who have been diagnosed with Growth Hormone Deficiency and have been prescribed growth hormone treatment. Parents/Caregivers of patients are eligible if they are responsible for either administering or supervising their child’s growth hormone injection on a daily basis.

All eligible parents/guardians have the option to participate in either the first or second study independently, or to participate in both studies. Taking part in the first study will involve filling out a 10-15 minute questionnaire via a URL address link sent by the King’s College London research team. If preferred, a paper copy with a self-addressed envelope can be posted instead. The second study involves taking part in a 30-40 minute interview, which can be completed either via telephone or face-to-face, at your earliest convenience.

The information collected from both studies will enable us to develop new ways of supporting the use of prescribed growth hormone treatment within endocrine clinical practice. Our findings will further help health care professionals to better support patients with growth hormone deficiencies and their families to get the best results from their prescribed treatment and self-manage their long-term condition effectively.

If you would like to get involved with the research project, we would be delighted to hear from you. If you have any queries or require further information with regards to the project, you can contact the research team via email at selina.graham@kcl.ac.uk

We look forward to hearing from you.

Thank you.

IMAGINE ID Research Opportunity: Can you help?

IMAGINE ID Research Opportunity: Can you help?

IMAGINE ID is a research study that aims to increase understanding of children and young people with intellectual disability. It is supported by UNIQUE, the rare chromosome disorder charity. The IMAGINE ID team is very keen to learn more about the link between behaviour and rare chromosome conditions. The study, led by University of Cambridge, University College London and Cardiff University, hopes to collect information from over 3,000 families by May 2019.

To participate in IMAGINE ID your child should be aged 4 or over. The research group is based in the UK but they are interested in families worldwide. If you live outside the UK, to take part you must have access to your child’s genetics reports. Taking part involves filling out secure online questionnaires about your child’s development and behaviour from the comfort of your own home. If you’re not happy with computers or do not have access to the internet, the IMAGINE ID team can go through the questionnaire with you over the telephone or in person. The questionnaires will take approximately 2-3 hours, but you are able to save your answers as you go and can login an unlimited number of times to complete it.

After completing this you will receive a personalised summary report which you may find useful when your child is undergoing assessment for services, school or specialist treatment. If you wish, members of the IMAGINE ID team may also visit you at home to conduct an interview with you and puzzles with your child.

If you are interested and want to find out more about the IMAGINE ID study please contact them by telephone on +44 (0)1223 254 631 or email them at imagine.id@nhs.net The team is very happy to answer any questions you have.

Cordinated Care for Rare Diseases Focus Group

New research study investigating how care should be coordinated for rare conditions

Are you 18 or over and a patient with a rare or undiagnosed condition?

Are you the parent or carer of a patient with a rare or undiagnosed condition?

Would you like to take part in a focus group to discuss research findings?

COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how care of people with rare diseases is coordinated in the UK and how patients and families would like them to be coordinated.

The focus groups will be run by a researcher and made up of a small group of patients and parents/carers. One focus group will be conducted online (11th December 2018) and the other will be conducted face to face in Birmingham (6th February 2019). The purpose of the focus groups will be to develop our understanding of information that is already available about co-ordinated care for rare diseases. The findings of the focus groups will inform the development of a survey which will be sent to patients, carers and health care professionals later in the study. The focus groups will take two hours. If you take part in a face to face focus group, travel expenses and child care costs will be reimbursed.

Who should I contact if I want to take part?

If you would like to take part in one of the focus groups, or you would like to ask further questions, please contact Holly Walton: holly.walton@ucl.ac.uk / 02031083068

Please note: It is possible that not everyone who wants to will be able to take part. We will ask you some basic questions about you and/or the person you care for (e.g. condition, age, location). This is to help us with selecting participants for the study so that, if we cannot manage to include everybody, we will be able to include a broad range of people and conditions. The information you provide will be kept securely and deleted after selection has taken place.

SGA Study News

SGA Research Study

SGA Metformin Study

Was your child born ‘small for dates’?

  • Are they still small for their age?
  • Has their doctor told you they may need growth hormone injections to help them grow?

They might be eligible to join a new study, find out more at:

http://paediatrics.medschl.cam.ac.uk/research/clinical-trials/

or contact:

SGAMetformin@paed.cam.ac.uk

Download the research poster, with more information, below:

SGA Clinic Poster [pdf]

Survey 2018

Child Growth Foundation Survey

We have developed this survey to capture your experiences and satisfaction relating to the support and treatment you are receiving from the staturoty bodies and from the Child Growth Foundation.

By gaining your thoughts and feelings on a number of topics we will be able to deliver the right support to you in the future. It will help us prioritise our spending and enable us to better meet your expectations of us.

The answers you provide will be treated with the strictest confidentiality. The survey should take around ten minutes to complete.

To start the survey click the image to the right.