The methodology underpinning the Health Needs Assessment Toolkit for Congenital Disorders has been published online in the Journal of Public Health.
The eight page exposition of the Toolkit, its aims, development and purpose is written by the Toolkit developers, led by Luis Nacul and comprising staff of the PHG Foundation, University College London and the London School of Hygiene and Tropical Medicine.
PHG Foundation Director, Hilary Burton said:
I am proud of the passion, commitment and sheer expertise shown by the PHG Foundation in putting together this comprehensive resource. By publishing our introductory methodological paper, the Journal of Public Health has made the Toolkit accessible to a worldwide audience — not only the facts, important though they are, but also the methods of health needs assessment and strategic planning that are so deeply embedded in the UK Public Health system.
The Toolkit as a resource for galvanising action
In 2010, the WHO called for action to tackle the increasing burden on health and health services arising from birth defects. The Health Needs Assessment Toolkit for Congenital Disorders enables users without epidemiological or public health expertise to undertake health needs assessment as a prerequisite for strategic planning in relation to congenital disorders in their country or region. It guides users through a selection of topics (including both clinical conditions and relevant health services), the collection and evaluation of qualitative and quantitative information, assessment of the potential effects of selected interventions, and planning and prioritization of actions to reduce the risk or prevalence of congenital disorders.
The importance of such a Toolkit is highlighted by its inclusion as a resource in the WHO South-East Asia Regional Office Prevention and Control of Birth Defects: strategic framework 2013-2017 report. The Toolkit specifically supports the collation of evidence-informed information to facilitate political commitment, policy formulation and programme development and the high-level advocacy for birth defects programmes as listed under the first strategic direction in the WHO report.
The article “A Toolkit to assess health needs for congenital disorders in low- and middle income countries: an instrument for public health action” was first published onlline in the J Public Health May 10, 2013 doi:10.1093/pubmed/fdt048
As reported in 21 November issue of OrphaNews Europe, a paper describing the experience in Argentina of researchers using the Toolkit to assess health needs for neural tube defects has been published in the Journal of Community Genetics. The paper sets out how, through the process of HNA, the team identified several unmet needs regarding registration of cases, public and professional education, legislation, and organisation of care pathways.
A brief summary of the feedback we received from our recent survey of Toolkit users. Thank you to all who participated.
Results of our Toolkit user survey (click to open PDF file)
Four new topics are now available free and online to help health and policy professionals, patient groups and the wider public across the globe address the burden of birth defects.
A global roadmap to address birth defects at the local level (click to open PDF file)
The PHG Foundation has awarded Professor Lavinia Schuler-Faccini ‘Visiting Fellow’ status for her significant contribution to the development and implementation of the PHG Foundation’s Health Needs Assessment Toolkit for Congenital Disorders in Brazil.
We are delighted to announce that the Health Needs Assessment Toolkit for Congenital Disorders is now freely available to the public.
Notes from the meeting in June 2011
Click here to download the minutes
Notes from the meeting in November 2010
Click here to download the minutes
Read how Argentina, Brazil and Uruguay have been piloting the HNA Toolkit
Click here to download the report
A selection of recent related articles from around the world.
A centre dedicated to investigating the diagnosis and treatment of birth defects has opened. The Newlife Birth Defects Research Centre said it would be the first in Europe to focus specifically on how birth defects arise and new ways to treat them
A new UK initiative will collate the largest DNA database of samples from children born with cleft lip and palate in an attempt to determine the underlying causes of these relatively common birth defects.
Data from more than 400,000 UK pregnancies (including nearly 1700 diabetic pregnancies) show a significantly increased risk of conditions such as congenital heart disease and spina bifida. The risk rose from around 19 cases per 1000 births to 72 cases per 1000 births among diabetic mothers. Researchers noted the importance of good blood sugar control in the earliest weeks of pregnancy to minimise the risk of such abnormalities in the fetus.
Diabetes is known to be associated with various complications of pregnancy, but this latest finding is of additional public health relevance in the light of the rising levels of diabetes among women of child-bearing age in many countries around the world resulting from increasing overweight, obesity and type 2 diabetes.
A prenatal and newborn-screening network will be expanded throughout the country to reach the target of serving 30 per cent of newborn babies and 15 per cent of pregnant women by 2015, according to Department of Population and Family Planning
Medium chain acyl-CoA dehydrogenase deficiency (MCADD) is a rare, life-threatening condition. Early diagnosis by screening asymptomatic newborns may improve outcome, but the benefit to newborns identified with variants not encountered clinically is uncertain.
New gene editing technique would heal patients with their own cells