Particpants Needed for Pituitary Conditions Study

Particpants 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.

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. 

Managing Growth Disorders Webinar

Managing growth disorders: integrating technology into a personalised approach

You may have missed the webinar on Tuesday 21st May but you still have the opportunity to watch it now.

The webinar discussed 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 view the recording, click the image above.

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.