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CDH UK collaborates with the Global Paedsurg Project

What is the Global Paedsurg Project?

It is a multi-centre prospective cohort study of congenital anomalies to compare outcomes between LMICs and high-income countries (HICs) globally.

 

What is a prospective cohort study?

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A prospective cohort study in a nutshell is a study design that follows over time a group of similar individuals (cohorts) who differ with respect to certain factors under study, to determine how these factors affect rates of a certain outcome.

 

What are the study aims?

  • To address the current scarcity of research on congenital anomalies, particularly from low- and middle-income countries (LMICs), by undertaking the first large series, geographically comprehensive multi-centre prospective cohort study of congenital anomalies across the globe. Such data is vital to inform advocacy efforts and global health prioritisation
  • To identify factors affecting outcomes of children with congenital anomalies to improve care.
  • To enhance research capacity amongst collaborators and combat the huge disparity in research outputs between low-, middle- and high-income countries at present.
  • To form a global paediatric surgical research collaboration to enable further research and intervention studies aimed at improving outcomes.

Why congenital anomalies?

In 2015, the Global Burden of Disease Study reported that congenital anomalies have risen to become the 5th leading cause of death in under 5-year olds globally. In real terms, this equates to almost half a million deaths/ year, with 97% of those deaths in LMICs.

At present, there is a stark scarcity of research on congenital anomalies from LMICs. Taking congenital diaphragmatic hernia as an example, we could identify just 14 studies on this condition from LMICs. Yet hundreds of studies have been published on the same condition from high-income countries. In addition, the LMIC studies that have been published are mostly single institution, small series, retrospective studies.

Why is this study of interest to CDH UK?

It is important because we are here to support anyone affected by Congenital Diaphragmatic Hernia and that includes patients, healthcare providers and researchers and this study should provide useful information to improve outcomes globally and to help with further research.

How Can CDH UK Help with the study?

We can provide our views on certain aspects of the study and we can assist in publicising the study and sharing it with our connections to hopefully see more collaborators join the project.

Where can I find out more about this study?

You can visit the Global Paedsurg website here http://globalpaedsurg.com/about-study/

 

Date: 15 Aug 2018 - 03:55 PM

CDH UK partners with the DHREAMS Study

DHREAMS - what does the Acronym stand for?

Diaphragmatic Hernia Research Exploration Advancing Molecular Science

Where is the study based?

The study is based at the Colombia University Medical Centre in New York and includes medical centres (hospitals) from across the US and other parts of the world. 

Wendy Chung, MD, PhD
Principal Investigator
Kennedy Family Professor of Pediatrics and Medicine

Julia Wynn, MS
Principal Study Coordinator
Certified Genetic Counselor

Becca Hernan, MS
Study Coordinator
Genetic Counselor

 

Has CDH UK donated to this study?

Yes, we met with the team in August 2017 to find out for ourselves who the team were and how the study was designed and is being conducted. We have made an initial donation of £10,000 for the recruitment of families into the study. There are currently no similar studies being undertaken in the UK and so our aim is to promote the study and to assist in the recruitment of participants.

What is the purpose of the "DHREAMS" study?

The scientific goal of the DHREAMS study is to develop a better understanding of the molecular genetic basis of CDH.  Our study is designed to identify specific alterations in genes that contribute to CDH through genetic analysis of biological samples from children with CDH and their family members.  We hope that the information gained through our study will lead to a better understanding of the cause of CDH which will in turn lead to significant advances in the diagnosis, prognosis, prevention, and treatment of this disease. 

Who is eligible to enroll?

Children with a CDH.

Individuals who are currently pregnant with a fetus (baby) who has been diagnosed with a CDH.

Infants who have been recently diagnosed (either prenatally or postnatally) with CDH, before or after the CDH has been repaired.

Children or adults who had a CDH that has been repaired in the past.

What is involved if my family participates in the study?

After the study is explained to you and all of your questions are answered, you will be asked to sign a consent form to participate in the study.

We will ask to collect biological samples (blood or saliva) from study participants. If you do not live close to one of the sites enrolling individuals, a kit can be sent by mail to collect a blood or saliva sample.  You DO NOT have to travel to be part of this study.

Saliva Collection
Saliva Collection (French Subtitles)

In some cases, if a child is having surgery we may ask for other types of biological samples including skin and diaphragm.  The collection of these samples will not affect the outcome of the surgery or increase the risk of the surgery.

We will collect information about your family history and medical history through an interview and by review of medical records. This information can be collected by a phone conversation with the family.

If your child is enrolled before two years of age and you live close to one of the sites enrolling individuals, we will ask your child to return for a developmental assessment at two years of age. There is no cost for this evaluation.

During the time your family is in the study, study coordinators will be in contact with your family.  You are free to call the study coordinators at any time with any questions or concerns that you may have

What are the benefits of participation in the study?

If we find information that may immediately affect the health of your child or your family and you agree to be contacted with this information, we will immediately report this information to your family and to your child’s doctor.

If your child is enrolled before 2 years of age and you live near a study site, he/she will receive a formal developmental assessment at 2 years of age.

Your family’s participation will help us to better understand CDH and how to better diagnose, treat, and prevent the condition. While many families may not immediately benefit from participation in the study, the information gained through the study over the years will be important for your family and other families affected by CDH in future generations.

There is no cost to participation in the study.

You do not have to travel to NY or one of the other medical centers to participate in the study.  If you do not live in the NY area and you would like to participate in the study, we can converse by phone and mail.

What are the risks of participation in the study?

If we collect a sample of blood, there is a small risk of a bruise at the site of the needle puncture.

There is no risk to providing a saliva sample.

If other biological samples are taken during a surgery, the collection of the samples will not affect the outcome of the surgery or increase the risk of the surgery.  Specifically, collection of diaphragm tissue will not affect the surgeon’s ability to repair the diaphragm and collection of skin tissue will not affect the surgeon’s ability to close the incision site.

Participation in this study will not affect your insurance coverage.  This study does not involve clinical diagnostic genetic testing and therefore should not be reported as genetic testing on an insurance (medical or life insurance) application.

This study is not a clinical trial.  Participants will not receive any medication or be part of any experimental procedures as part of this study. 

Is there any cost?

There is no cost to you or your family.

Is our information private?

All information obtained through this study will remain strictly anonymous and confidential.  Research findings will not be part of your medical records. Your family’s name will not be published

Do I have to participate in the study?

No.  Participation is voluntary.  Your medical care will not be altered based on your family’s participation.

Can I withdraw from the study?

Yes. You may withdrawal from the study at any time by contacting one of the research coordinators.

How do I enroll in the study?

Contact Becca Hernan, research coordinator, at (646) 317-6503 or .(JavaScript must be enabled to view this email address) to learn more about the study or find out how to enroll.

Can I enroll if I'm currently pregnant?

Currently Pregnant

Women who are currently pregnant with a baby affected with CDH can participate in DHREAMS. If you are not planning to deliver with one of the DHREAMS affiliated hospitals we can work with your family and health care team to enroll your family in DHREAMS. Please contact Becca at .(JavaScript must be enabled to view this email address) for more information.

Can I enroll if my child is deceased?

Presently we are only able to enroll families in the DHREAMS study when we are able to obtain a biological sample from the affected child. If your child passed away, there may be a biological sample on your child if your child had an postmortem, if he/she had any type of surgery or if your family elected to store cord blood. Our research coordinator, Becca Hernan, can work with your family to determine if there is a biological sample. Please contact Becca at .(JavaScript must be enabled to view this email address) or (646) 317-6503 for more information.

Other options: DNA banking

Regardless of your decision to participate in the DHREAMS study, we encourage all families of children with a birth defect to save a blood sample or other biological sample from the child, especially if the child is critically ill. Even if a genetic cause cannot be detected by current testing methods, additional, more sensitive genetic tests will become available in the future. The ability to go back and complete additional testing may provide your family with valuable information about the risk to have a child affected with the same condition or information as to how to prevent the birth defect in future children. If a sample is not saved, this testing will not be possible. There are several commercial laboratories that offer DNA banking for a small fee. We, Columbia University Medical Center and any other medical center represented on this site, are not affiliated with any of these labs.

 

 

Date: 14 Aug 2018 - 03:10 PM

ERNICA website goes live!

The European Network for Rare and Inherited Congenital Abnormalities (ERNICA) website has now gone live and we would like your feedback on it to ensure that it can continue to develop and improve for patients as well as Medics. You can read all about ERNICA and find out about CDH UK's involvement as a founding  patient organisation and ePAG on the patient involvement page. You can email .(JavaScript must be enabled to view this email address) with your suggestions or comments on the website itself.

Read the rest of this article

Date: 06 Aug 2018 - 02:33 PM

Our GDPR Statement

On 25th May 2018 a new General Data Protection Regulation (GDPR) came into force. This is our statement.

Date: 02 Aug 2018 - 01:29 PM

Awareness Day National Radio Campaign

28th June is CDH Awareness Day and this year we have interviews with families and patients taking place up and down the country to make a real impact on raising awareness. This is the largest radio campaign ever undertaken for CDH.

We will hear from one of our Patron's Professor Paolo De Coppi from The Institute for Child Health and Great Ormond Street Hospital, along with our Secretary & Trustee Beverley Power live from the London Studio and broadcasting out to BBC Radio Three Counties and other stations. We will also hear from Brenda Lane the Charity's Chairperson and Trustee who will be talking live from BBC Radio Norwich.

Tune in if you can!

Our other families will be live throughout the day from the following radio stations (more will be added on the day):

Capital, Heart, Smooth Wales

BBC Wales

BBC Essex

Metro & TFM (North East)

BBCRadio Norwich

BBC Three counties

Express FM

Time FM

Pulse 98.5 (Scotland)

Radio Wandsworth

Radio Jackie

Radio Saltire (Scotland)

Waves

Radio Swindon

Forest FM

Black Diamond

UCB

The Voice North Devon

Time 107.5

SFM

 

Date: 27 Jun 2018 - 01:10 PM

What a great IDEA!

CDH UK is pleased to announce the start of a new international alliance to bring together diaphragmatic and other abdominal wall anomalies organisations and patient representatives under the umbrella organisation called IDEA. IDEA is the acronym for International Diaphragmatic Hernia, Eventration and Abdominal wall Anomalies Alliance. The conditions covered are:

Congenital Diaphragmatic Hernia

Acquired or incidental Diaphragmatic Hernia

Eventration of the Diaphragm

Hiatus Hernia

Gastroschisis

Exomphalos/Omphalocele

This will be an opportunity to mentor and support and disseminate information globally and to allow organisations and patients representing their disease or condition to collaborate and engage with healthcare providers, healthcare professionals and patients and families. 

The IDEA website is currently under construction and anyone wishing to engage with IDEA or obtain further information can contact IDEA via .(JavaScript must be enabled to view this email address) in the first instance.

Great things start with a great IDEA!

Date: 23 Jun 2018 - 09:52 AM

JOG 4 JUNE 4 CDH! A Marathon In A Month!

June is CDH Awareness Month and so we are inviting you to take part in an awareness/fundraising campaign that everyone can take part in (even the dog!), that you can fit in with you lifestyle and that gets you up and moving for a great cause! We are asking you to walk, jog or run a marathon in a month (26 miles), which you can do either in the comfort of your own home or in the great outdoors; it is totally up to you! If you have a garden, run around that, if you have a local running track, run around that, walk or jog around your local park or playing fields, run on a main route, or on a treadmill, it really is up to you how, when and where you do it as long as you do it during June and you provide us with evidence that you have completed a Marathon in A Month! It is really simple to participate in and all you need to do is to pay your £15 registration fee ensure you have suitable clothing and footwear for walking, jogging or running in and access to a health app for a PC or mobile to record miles and provide evidence. It would be great especially if completing the Marathon outdoors if you could help raise CDH awareness by wearing Pink and blue or purchase a t-shirt or running vest. If you want to raise more funds for CDH UK, then you will also be sent a sponsor form template upon registation and away you go! You can also send in pictures of yourself clocking up those miles, to raise awareness and inspire others or post them on your social media accounts using the hashtags #Jog4June4CDH and #MarathonInAMonth At the end of June submit your evidence to .(JavaScript must be enabled to view this email address) along with your sponsor forms and details of funds raised. You will receive a medal and certificate once everything has been received and we can be sure you have completed your 26 miles between the 1st and 30th of June. For the person who completes the Marathon in the shortest time, there will be a winners trophy and for the person raising the most amount of money there will be a gold badge (not real gold sadly!) and of course the other benefit is that you will have helped to keep yourself active during June. Find out everything you need to know about CDH by reading our 'about CDH' section and make your Jog 4 June 4 CDH a really successful awareness event!

 

To register and set up your own online fundraising page click the link below:

https://cdhuk.charitycheckout.co.uk/cf/JOG-4-JUNE-4-CDH

P.S If you are a school that would like to take part, then please contact us about our Jog 4 Juniors!

Date: 14 May 2018 - 12:05 PM

AGM 2018

PUBLIC NOTICE

Our Annual General Meeting (AGM) will be held on Sunday 8th April at 12pm at:

The Fieldhouse Hotel

Markfield Lane

Leicester

LE67 9PS

Please address any questions to the Committee by emailing .(JavaScript must be enabled to view this email address) or in writing to the registered office address at least two weeks prior to the AGM to allow adequate time for any relevant paperwork to be ready to present during the meeting.

 

Date: 18 Mar 2018 - 11:41 AM

Christmas Newsletter 2017

CDH Newsletter

Click here to view our 2017 Christmas Newsletter.

Date: 21 Dec 2017 - 04:03 PM

Congenital Diaphragmatic Hernia International Symposium Meeting

CDH UK is proud to be a sponsor for the upcoming CDH International Meeting for Medical professionals and associated organisations on the 14th and 15th of November 2017 at Alder Hey Children's Hospital, Liverpool. We particularly welcome patient Support Groups to this meeting. Full details as follows:

1st Announcement

 

Congenital Diaphragmatic Hernia

International SYMPOSIUM Meeting  - Liverpool  2017

 

November 14th – NOVEMBER 15TH 2017

 

Dear Colleagues and Friends ,

 

It is a privilege to announce and warmly invite you to join us in Liverpool for the 2017 International Congenital Diaphragmatic Hernia Workshop Meeting. 

 

The CDH meeting is being held as part of an event programme linking closely also with the Peter Paul Rickham Symposium which celebrates the life-time achievements of an eminent paediatric surgeon who was co-founder of the World’s 1st Neonatal Surgical Unit at Alder Hey Children’s Hospital in 1953.  A faculty of leading experts will deliver state-of-the-art lectures pertinent to clinical care and management of CDH ( prenatal /  postnatal / long term follow up ) including  the latest advances in the basic sciences / developmental lung biology of particular relevance to the clinician / investigator(s).   We invite Abstract submission(s) as free paper scientific sessions are a key feature included in the 2 day symposium timetable.

 

CDH Parent support groups are particularly invited to attend and contribute . We are delighted to announce that CDH UK will be joining us for the 1st International CDH Symposium to be held in the UK. 

 

Professor Paul Losty

On behalf of the local organising committee

 

Instructions

 

Abstracts are welcome on every aspect of CDH which will be scored , evaluated and selected by the scientific committee. Free paper sessions / posters presentations will be timetabled in the meeting programme scheduled with faculty lectures.  

 

On behalf of the local organising committee, CDH UK and the CDH EURO CONSORTIUM

we therefore request you reserve the dates : November 14th – 16th 2017 in your diary and encourage your colleagues to submit abstracts.

 

Workshop fee : The CDH workshop fee - which includes lunches and refreshments -  ‘ early bird ‘ rate - £ 250  - payment details to follow.

 

Abstract Format  - Aims , Methods , Results ,  Conclusions – 350 words maximum.

Indicate submission preference  – Oral or poster presentation category  

 

Abstracts mail to :  .(JavaScript must be enabled to view this email address)

 

Deadline for abstract submission  -  July 30th  2017

Abstract acceptance will be announced -  August 31st  2017

 

Please note :  The Peter Paul Rickham Symposium is a full 1 day event conference being held on November 16th 2017. The clinical & scientific programme for the Rickham meeting will be finalised and announced in Summer 2017.  ( Registration delegate fee / Social evening event with PPR dinner is also available for this 1 day conference  ).  Details here to follow in future 2nd announcement(s). 

 

Those delegates registering and attending the CDH International Workshop - a 2 day scientific meeting ( November 14th and 15th  ) will have a special conference fee rate ( £ ) also included for the Rickham Symposium which immediately follows on November 16th 2017 ) – to be confirmed.

 

Professor Dick Tibboel – Sophia Children’s Hospital , Erasmus University Rotterdam , Netherlands will deliver the 2017 Peter Paul Rickham Guest Lecture.

 

Hotel arrangements :   A list of hotels / delegate rates (£)  will be provided

 

Enquiries and further information :

 

Moira Saphier – Executive PA

Institute of Child Health

Alder Hey Children’s Hospital , Liverpool , UK

 Email : .(JavaScript must be enabled to view this email address)

Tel : + 44-151-252-5250

For registration please click on the following link: http://payments.liv.ac.uk/conferences-and-events/events-at-liverpool/institute-of-translational-medicine/congenital-diaphragmatic-hernia-international-symposium-and-peter-paul-rickham-symposium-nov-2017

 

 

Date: 06 Sep 2017 - 12:20 PM

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