We know that staying up to date on the latest guidelines and research is hard… we want to help.
The Foundation wants to be a ‘hub’ of learning for those caring for people with Down’s syndrome. We have collated examples of good practice and clinical guidelines to support your practice below. We are lobbying for national guidelines of excellence for care of those with DS. We’ve made our conference footage available as a library of the best scientists speaking on DS research for you here.
Searching for research papers can be cumbersome but Down Syndrome International has a great searchable database for abstracts here.
Delivering the diagnosis
There are a number of online resources available to you to improve your clinical skills around this difficult time for parents. It is imperative to stay up to date with information about the real lived experience of Down’s syndrome currently.
An important recent publication, When Bad News Isn’t Necessarily Bad: Recognizing Provider Bias When Sharing Unexpected News, in the journal Pediatrics has significant helpful information for clinicians working on the front line.
Is “a program designed to increase physicians’ knowledge about providing accurate and balanced information to families and prospective parents at the initial point of diagnosis of Down syndrome (DS) at birth or in utero. Whether you are an obstetrician, paediatrician, family practitioner, geneticist, or related medical practitioner, learning about DS and the key elements of providing a diagnosis can help you communicate more effectively with your patients. We have found in our effectiveness studies that physicians profit from the material across both components (prenatal and newborn diagnosis), regardless of their speciality.”
The Down’s Syndrome Association will attend your antenatal department at deliver their Tell it Right Start It Right Training.
Perinatal Services British Colombia has developed “Management of Pregnancies Diagnosed with Down Syndrome” to optimize maternal and newborn outcomes in this patient population.
DSMIG surveillance guidelines “have been developed on the basis of available evidence by a group of clinicians with a special interest in Down syndrome. They are updated as new research and audit evidence becomes available. The Royal College of Paediatrics and Child Health has been supportive of the venture and we have had guidance from the Centre for Evidence-Based Child Health. The guidelines are not a blueprint for Gold Star services. Their purpose is to set out a minimum safe standard of basic medical surveillance which we consider essential for all those with the syndrome in the UK and Republic of Ireland.”.
Dr Marder and colleagues have written the “Nottingham Guidelines for the Management of Children with Down Syndrome” for Children and young people aged 0-18 years with Down Syndrome.
Down’s syndrome Pathway – a whole life time guideline from Hull Clinical Commissioning Group
Managing the care of adults with Down’s syndrome
BMJ 2014; 349 doi: https://doi.org/10.1136/bmj.g5596
Dr Vee Prasher has written “Screening of medical problems in adults with Down syndrome” which is available here.