Silver-Russell Syndrome Height and BMI Study

Silver-Russell Syndrome Height and BMI Study

New Silver-Russell Syndrome Study

Latest research supports the use of growth hormone treatment in Silver-Russell Syndrome for increasing height SDS (standard deviation score). Growth hormone treatment was also associated with lower adult BMI which may reflect improved metabolic health even following discontinuation of therapy.

The observational study collected height and height gain data, plus BMI data, from 71 people diagnosed with Silver-Russell syndrome.

Click below to read more about the study

Height & body mass study in Silver-Russell Syndrome

 

Or click HERE to find out more about Silver-Russell Syndrome.

PenCycle

PenCycle

Reclycing Initiative Launched by Novo Nordisk

PenCycle is the exciting new environmental initiative by Novo Nordisk which aims to drastically reduce the amount of waste produced by pre-filled medication pens.

As part of their ‘Circular for Zero’ environmental change policy, they have created a recycling scheme for the pens, which includes their pre-filled growth hormone pen, which will help reduce the 23 million pens currently going into landfill or being incinerated each year.

The plan is simple, instead of placing your empty pen in the sharps bin, take the needle off and put the rest of the pen into the PenCycle box (the needle goes in your sharps bin as usual). The Pencycle box will be delivered to you through your Alcura service and Alcura will take the box away when it is full.

The pens will then avoid landfill and may then be recycled into chairs or light bulbs.

The pilot scheme will run for 6 months initially, in a small number of areas using the Alcura delivery servie. During the pilot Novo Nordisk are looking for a 30% uptake to the scheme, and then will then decide how to roll the programme out further.

To find out more download the PENCYCLE leaflet

or visit the growth hormone pre-filled pen WEBPAGE

Virtual Convention 2020

Virtual Convention 2020

Virtual Convention 2020

In October we delivered our (un)usual annual convention, which means that traditionally, on these pages, we bring you gloriously amazing pictures of fancy dress frivolity featuring superheroes, Disney characters, festival hippies and so much more. This year, we bring you a zoom meeting…

Yes, it was different. Yes, it was COVID and yes, it was lockdown. But we made the best of it! We were actually very nervous about it. We had some fabulous speakers and presentations lined up. We had the wonderful membership family ready to engage. We had an army of volunteer support. But what if the technology lets us down? What if broadband breaks? What if Zoom melts?

What if Neil sent out the wrong link for the first day of the Convention and only discovered the error half an hour before it was due to start! Surely, that would never happen – erm, well yes it did, and he is still very embarrassed about it!

That hitch aside it all went swimmingly well. All three days were thoroughly engaging, interesting and informative. We shouldn’t really be surprised. The Child Growth Foundation is built on connecting parents & families with each other and with the very best experts in the field. And that is what we did again. Fantastic speakers but more importantly all those who attended came wanting to learn, wanting to ask, and wanting to share. We all agreed the lack of the physical togetherness was a shame, but do you know what – it still felt a very close and intimate day, it felt like we all connected and it turned out to be a very personal, and enjoyable few days.

A Convention, but not as we know it…

Saturday 24th October – SRS/IUGR/SGA

The first day covered SRS/IUGR and SGA and was kicked off by a live Q&A session with Dr Justin Davies, that could probably have gone on all day! It didn’t, which is just as well as there were some fabulous talks lined up. Dr Helen Storr provided an update on the GRASP project findings and Dr Deborah Mackay gave us an overview of genetic diagnosis of SRS and SGA, as well as an update on the SRS research study the CGF is currently funding. We broke for lunch, and some left their cameras on so we could see what they were having! Before we all returned for an afternoon that explored adult health issues in SRS with Dr Karen Temple and cognition and behaviour issues in SRS with Dr Megan Freeth. The day finished with a group chat.

The support from the speakers was fantastic, some were recorded and some were live and we have to say a huge thank you to Dr Temple who was actually on holiday, well coming home from holiday, and following her recorded presentation came on live from her car on the motorway (she wasn’t driving!) to answer questions. It was amazing of her to give that time to us, and we were delighted to see her get home safely and be welcomed home by a very excited puppy!

Dogs were quite a theme of the three days, with many zoom-bombing pooches stealing the limelight of the talks!

Saturday 31st October – GHD & MPHD

Day two covered GHD and hypopituitarism and again, was very well attended. It was opened by the wonderful Dr Harshini Katugampola with the fabulously titled presentation “It Takes Two to Tango” which covered growth and puberty.

This was followed by a live, and very hands on, presentation by Endocrine Specialist Nurse, Claire Westcott, who talked about emergency adrenal crisis, sick day rules and management. This session walked us through how to inject, with live demonstrations involving oranges and out of date medical equipment! The oranges felt no pain from the injections but sadly, the medication was out of date so no discernible growth benefit was recorded!

After lunch Dr Helena Gleeson provided a much-needed guide to transitioning to adult services and after that Nurse Specialist Helen Smart gave a thorough overview of management and treatment options for GHD & hypopituitarism . The day was again finished off with a group chat that ended with an impromptu musical performance!

Saturday 14th November – Sotos Syndrome

The third day of our convention focussed on Sotos Syndrome and opened with a presentation by Dr Megan Freeth on cognition and behaviour issues. After a short break we returned to hear a super introduction to Sotos Syndrome from Dr Kate Tatton-Brown, followed by many, many questions.

Then came the amazing double act of Dr Alison Foster and Dr Alice Welham who took us through Sotos syndrome the pre-teen years and then Sotos syndrome the adult years. It was a really well-developed programme that gave attendees much opportunity to discuss concerns, and the speakers hung around throughout, answering questions and providing guidance. The third day was incredibly well attended and the group chat to finish the event went on for some time with a great deal of bonding and peer support. We received a lot of offers of help to build up our Sotos support network and we are incredibly grateful and look forward to what we can build.

CGF Virtual Convention

CGF Virtual Convention

***Exciting News***

We are delighted to announce the dates for our Virtual Convention. It is free to full members this year, so please make sure your membership is up to date.

To become a full member visit: Membership

NICE Faltering Growth Quality Standard

NICE Faltering Growth Quality Standard

NICE has published a quality standard for faltering growth

The faltering growth quality standard covers recognising and managing faltering growth in babies (aged up to 1 year) and preschool children (aged over 1 year). It describes high-quality care in priority areas for improvement. CGF trustee, Rachel Pidcock, was a lay member on the specialist committee and contributed towards the quality standard, the CGF was also a stakeholder in its development.

The standard aims to improve the identification, management and support related to faltering growth and focusses upon four core statements:

  1. Measurement: Babies and preschool children have their measurements plotted on a growth chart if there are concerns about faltering growth. You can download our measuring guidelines at MAKE EVERY CONTACT COUNT
  2. Feeding or eating history: Babies and preschool children have a detailed feeding or eating history taken if there are concerns about faltering growth.
  3. Management Plan: Babies and preschool children have a management plan with specific goals if there are concerns about faltering growth.
  4. Supporting breastfeeding: Mothers are supported to continue breastfeeding if their baby is given supplementation with formula because of concerns about faltering growth.

You find out more about the standard at this link: NICE Faltering Growth Quality Standard

Or, download the pdf HERE

 

NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing NICE or NICE-accredited guidance that provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.

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