The Down's Syndrome Medical Interest Group
encouraging best-practice medical care for people with Down's Syndrome
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Site Editor Dr Jennifer Dennis

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© DSMIG 2002-6

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What's New

22 April 2008

Updated membership application forms now available

New contact address and phone number for Down Syndrome Ireland

In the Restricted access members' section, new member profiles and updated membership list, plus a number of minutes and presentations from previous meetings.

15 April 2008

Provisional programme for DSMIG June meeting updated

29 March 2008

Details of Down's Syndrome presentations and events at the RCPCH 2008 Spring Meeting are available on the noticeboard. Details of the informal members dinner on Tues 14 will be posted shortly.

A number of new and archive documents are now available online:

20 November 2007

Programme for the One-day Symposium & Member's Meeting on 23 November is now available.

Membership List updated (Restricted access members only)

2 October 2007

For members

An updated Membership List and slides from Helen Wolfenden's presentation Audit of Obstructive Sleep Apnoea from the June 2007 meeting are now available.

16 August 2007

Forthcoming meetings

Preliminary information on the Noticeboard and in the Restricted access members’ section about meetings on Nov 23rd 2007 and June 5th 2008.

Presentations from the One-day Symposium and Members Meeting on 9 June 2007 are now available for members to download.

Eye problems in children with Down's syndrome: Notes for parents and carers (PDF)

A small change has been made to the 2006 version of this document. At the end of the first para of ‘treatment of squint’ the lines beginning ‘the drops used nowadays’ have been deleted and new material substituted. There have otherwise been no changes. The updated version is available to download as a PDF.

Membership list updated (Restricted access member-access only)

06 June 2007

Programme update for 8 June meeting

The programme for Friday's meeting has been slightly re-arranged.

05 June 2007

Final Programme: One-day Symposium, Glasgow, 8 June 2007

The final programme for Friday's members meeting in Glasgow is now available.

New DSMIG contact number

The DSMIG Nottingham office has a new direct phone number: 0115 962 7658 ext 31158/7. The new direct dial number will be available from 21 June and will be 0115 883 1158/7.

29 March 2007

Steering Group and Business Meeting Minutes for Oct 2006 are now available from the Members Section Meetings page (Restricted access member access only).

22 March 2007

Steering Group and One-Day Symposium, June 2007

Details of the DSMIG Steering Group Meeting (Thursday June 8th) and one-day symposium and members' meeting (Friday June 9th), are now available on the Noticeboard. Both will be held in Glasgow. The keynote topics for the meeting are epilepsy and rheumatology. Non-members are welcome to the Open part of one-day symposium on Friday June 9th.

Testing for Down's syndrome in pregnancy

The new combined screening booklet 'Screening Tests for You and Your Baby' is now available.

Immunisation issues in Down's syndrome: An Update (Restricted access members only)

Edited transcript and Powerpoint Slides of Professor David Elliman's talk at the November 2005 members' meeting

Profiles of new members (Restricted access members only)
The information on new members which is circulated at DSMIG meetings is now available online for members joining since November 2005.

List of UK specialist clinics

The list of clinics on the page on Healthcare services and support for people with Down’s syndrome in the UK has been updated. We now have 15 clinics listed and are working to compile a more comprehensive directory. If you know of or are involved in a clinic which isn't listed please let us know.

19 March 2007

DSMIG activities at the 2007 RCPCH Spring Meeting (York) March 26th - 29th

Details of open business meeting, DSMIG information point and informal dinner

12 February 2007

Membership List updated (Restricted access Members only)

25 January 2007

Testing for Down's syndrome in Pregnancy

Printed copies of this information booklet from the UK National Screening Committee have now run out. You can still download copies in PDF format from www.screening.nhs.uk/downs/women.htm. A new booklet combining information from five antenatal and newborn screening programmes, including Down's syndrome, will be available in March.

Useful Organisations

Details of Useful Organisations have been updated with the latest information.

Slides/Handouts from Members Meetings (Restricted access members only)

Links to Tony O'Sullivan's handouts and slides from the November 2003 member's meeting have been fixed.


Archive

23 November 2006

Presentations by Dr George Capone at the DSMIG October 2006 Members' Meeting (member access only) are now available from the Members section

Updated information on how and where to obtain the information booklet "Testing for Down's syndrome in Pregnancy" from the UK National Screening Committee

25 October 2006

British Gymnastics Atlanto-Axial Information Pack (PDF)

British Gymnastics have kindly given us permission to reproduce their information pack on the participation by people with Down's Syndrome in gymnastics and trampolining. The pack includes the British Gymnastics screening form which must be completed by a Medical Practitioner before a child or adult with Down's Syndrome can participate in these activities.

HONcode accreditation renewed

Our HONcode accreditation has been confirmed for another year. The HONcode is the Health On the Net Foundation's initiative to improve the quality of medical information on the Internet, and accredited sites must conform to 8 principles for supplying reputable medical information. The DSMIG website has been acredited since 2002.

13 October 2006

DSA Medical Series Updated

Three of the DSA Medical Series booklets have been updated. It will be some time before the updated booklets are available from the DSA, but the updated versions are available now in PDF format from this website:

Updates to the other booklets will be available later this year.

Gastrointestinal disorders in people with Down's syndrome: an Overview (PDF)

Full edited transcript of paper given by Dr Charlie Charlton at RSM conference April 2001.

Presentations from May 2006 Members Meeting (member access only)

Programmes from past DSMIG meetings are now publicly available from the Noticeboard

Down's Syndrome Demography

A series of quick reference sheets in A4 format, giving key statistics and data on prevalance/incidence, prevalence by maternal age, dementia and life expectancy, are now available from the Medical Library.

27 September 2006

15 September 2006

22 August 2006

  • Provisional programme and change of date for the autumn members meeting to 13 Oct 2006. See Noticeboard for details .

17 August 2006

9 May 2006

DSMIG Members Meeting, May 2006

Final programme now available

21 April 2006

13 March 2006

DSMIG Website Workshop (RCPCH Spring Meeting, April 2006)

If you are coming to the RCPCH Spring Meeting please consider coming to our website workshop on April 5th from 1-3pm. The session is open to all comers, not just DSMIG members. The aim is to gather feedback from website visitors and look at how this site can be improved. The session will be informal and interactive. Even if you do not visit the site often please join us as all input is valuable.

No technical skills are necessary! We simply want to learn more about how medical professionals might use the site on a day-to-day basis. So all you need to bring is yourself.

Other DSMIG Activities at the RCPCH Spring Meeting (York), 3-6 April 2006

Details of the DSMIG information point and informal dinner

Updated Vision Guideline and Related Materials

Transcripts and Minutes from DSMIG Members Meetings (Members Only)

Guidelines Review Schedule

We receive many queries about Guideline updates. Our review schedule is now available online.

DSMIG Members Meeting, May 2006

Outline programme now available

The November meeting has been set for 10th November 2006 at the Royal Society of Medicine, London.

Bright Beginnings

The Downs Syndrome Research Foundation has produced a delightful booklet about Down’s syndrome called Bright Beginnings. However we are concerned that this may give some new parents the impression that there is little in the way of medical services for children with Down’s syndrome in the UK. Click here to find out more about healthcare services and support in the UK

12 January 2006

Membership list updated (member access only)

24 October 2005

Details of forthcoming events from the UK Down's Syndrome Assocation, including:

  • Sexuality & Relationships: Supporting Adults with Learning Disabilities
    Thursday 27th October 2005
  • Supporting Pupils with Down's Syndrome: 3 day NVQ accredited course
    Friday 13th January, Friday 3rd February, Friday 3rd March 2006
  • Let's talk about sex and relationships Parent Friendly
    Short seminars. Postponed until January 2006

Full details and booking forms from the Noticeboard

20 October 2005

Dates for forthcoming members meetings are now available. See the noticeboard for details. Provisional Programme for November 2005 members' meeting

17 October 2005

A number of new documents from recent members' meetings are now available for Members, all in PDF format:

Also powerpoint slides from Leela Baksi of Symbol UK's presentation at the May 2005 meeting "Assessment and management of problems arising from oral motor dysfunction in children with Down’s Syndrome"

12 April 2005
DSMIG business meeting and social events at RCPCH, York, April 19th (member access only)

The updated provisional programme for the members' meeting at the Langdon Down Centre, Teddington, Middx on May 27th is posted on the Noticeboard. The special topic is "oral motor problems in children with Down's syndrome". We are very fortunate to have as our guest speaker Professor David Andrade from Portugal. David is a paediatric dentist who has pioneered the use of the Castillo Morales plate in Portugal. He will talk about this and other dentomaxillo-facial treatments in the context of dentomaxillo-facial development in Down's syndrome.

As this is likely to be of interest to speech and language therapists and other healthcare professionals non-members are welcome if places are available - see Noticeboard for registration details

17 February 2005
Membership list updated (member access only)

21 January 2005
Growth Online: Introducing the new Online Growth Chart service (5Mb. Members only)
Powerpoint Presentation from recent Members Meeting by Vince Hume, Southern Regional Sales Manager - Harlow Printing, South Shields. Please note this is a large download.

15 November 2004
Latest additions to the Medical Library:

4 November 2004
The final programme for the members' meeting in London on Nov 19th is posted in the members' area. The special topic for the afternoon session in Obesity and Exercise. This session will be open to healthcare professionals who are non members if places become available. Fee £20. For further details apply to:

Joyce Judson info@dsmig.org.uk

DSMIG posters at the EACD meeting in Edinburgh

We presented two posters (one about the website and one about the PCHR insert) at the European Academy of Childhood Disability meeting in Edinburgh on Oct 6th - 8th. Members can view these in the Members' Section.

The DSMIG information service July 2000 - May 2003: facts and figures (member access only)
Power point presentation from the Members' Meeting June 2003.

27 September 2004
Membership list updated (member access only)

23 August 2004
Useful Organisations and Links
Contact details for MENCAP (tel, fax and email), Enable (website), and Down's Syndrome Ireland (email) have been updated.

New Membership Application Form available in both Word and PDF format.

16 August 2004
Updated membership list now available (member access only)

Slides and handouts now available for the presentation on "Transition: Planning with disabled young people for their adult life" given by Tony O'Sullivan, Community Paediatrician, Lewisham at DSMIG Members Meeting, Nov 2003. (Members only)

4 May 2004
Updates on Future Meetings
Advance information on November meeting's specialist topic: "Obesity and exercise", plus provisional date for the May '05 meeting.

4 May 2004
New membership information and application form available.

4 May 2004
Final programme for Dublin meeting confirmed

25 March 2004
'Open' Steering Group Meeting and Informal Members Dinner
Dinner: MONDAY 29th MARCH. Steering Group: TUESDAY 30th MARCH, 12.00 - 15.00 HRS. RCPCH Conference. YORK

4 March 2004
We continue to expand the new Members' area. Minutes and case discussions from the May 2002 Members meeting are now available, along with an updated membership list.

If you are a DSMIG member and have not yet registered to access the new members' area, please email Joyce Judson on info@dsmig.org.uk your preferred username and password.

25 February 2004

27 January 2003
New Members Area launched
The new members area contains a wealth of information useful to DSMIG members, including full minutes and summaries of case discussions from past meetings, DSMIG newsletters, and an up-to-date membership list. Members who requested a username at the November 2003 meeting should have received passwords etc... by email. Any other members can request a password by contacting Joyce Judson (e: info@dsmig.org.uk).

27 January 2003
Site Updates
A range of other site updates have also been completed.

  • New Contact forms for medical and non-medical queries. These will make it easier for us to deal with enquiries, and also bring us fully into line with data protection best-practice.
  • New Support Our Work page with details of DSMIG's funding and how you can contribute to our work.
  • Updated Book Reviews with details on how to order copies through Amazon. We receive a small commission for any books ordered through these links. If you'd like to support our work, you might consider buying any books you want from Amazon through these links.
  • Added HON Code logo, showing that this site subscribes to the 'Health on the Net' principles for online medical information.

19 November 2003
Programme for Members Meeting: updated with new start time for presentations of 12.15pm.

11 November 2003
Members Meeting: Friday 21 November 2003
Programme and registration information now available.

29 July 2003
Details of the RSM Forum on Learning Disability one-day conference 'Understanding the genetic causes of learning disability: how knowledge can guide good education and social practice'.
Full programme and booking information from RSM website.

29 July 2003
Details of the RSM Forum on Learning Disability series of four evening meetings on 'Sexual wellbeing, relationships, responsibilities and reproductive health for people with learning disabilities'.
Full programme and booking information from RSM website.

12 June 2003
Final programme for Members' Meeting on 20 June now available.

16 April 2003
Sleep related upper airway obstruction in Down's syndrome: Diagnostic approaches and treatment. (PDF)
Summary of conference paper given by Dr Martin Samuels at the conference 'More Medical Issues in Down's syndrome' held at The Royal Society of Medicine, London, on April 26th 2001. See Conference Procedings in DSMIG Information Resources for full transcript and keypoints, as well as other papers presented at the conference.

20 March 2002
Change of Date for Next Members' Meeting
The next members' meeting will now be held in Nottingham on June 20th, not May 23rd as previously advertised.

14 March 2002
Provisional programme for Members' Meeting on 20 June (note! change of date from 23 May) now available [replaced by final version, 12 June 2003]. Dates for Steering group meeting at RCPCH conference in York and members' meeting in November 2003 also added to noticeboard.

22nd November 2002
New cross section stature, weight and head circumferences for Down's Syndrome in the UK and Republic of Ireland. Styles ME, Cole TJ, Dennis J, Preece MA. Arch Dis Ch 2002 87 104-108.
Background information about the new UK Down's syndrome growth charts which were commissioned by dsmig.

22nd November 2002
Cushing's syndrome, growth impairment, and occult adrenal suppression associated with intranasal steroids. Perry, R J; Findlay, C A; Donaldson, M D C Archives of Disease in Childhood Volume 87(1) July 2002 pp 45-48.
This paper draws particular attention to a child with Down's syndrome who became floridly Cushingoid and with growth failure due to long standing use of intranasal steroids. Adrenal suppression was seen not only with betamethasone but also with budesonide, beclomethasone and flunisolide nasal preparations. The authors advise that 'a careful enquiry as to the use of intranasal steroids should be routine in children presenting with unexplained growth failure or Cushing's syndrome. Particular vigilance/awareness is required in children with dysmorphic syndromes.'

22nd November 2002
Diagnosis of Down's syndrome in neonates. Hindley D, Medakkar S, Arch Dis Child Neonatal Ed 2002 87 F220-221.
This short report looks at clinical accuracy in the diagnosis of DS in newborns revealing nationally 36% false positives. It is suggested that use of clinical diagnostic indices should be investigated in an attempt to improve the situation and reduce distress caused to families by false clinical diagnoses. The dsmig network could possibly help in this.

28th June 2002
Respiratory disorders in Down's syndrome: Overview with diagnostic and treatment options
Summary of conference paper given by Dr Iolo Doull at a conference 'More Medical Issues in Down's syndrome' - held at The Royal Society of Medicine, London, on April 26th 2001 (pdf).

28th June 2002
Blood diseases in people with Down's syndrome: Overview and update
Summary of conference paper by Professor Judith Chessells at a conference 'More Medical Issues in Down's syndrome' - held at The Royal Society of Medicine, London, on April 26th 2001 (pdf).

28th June 2002
Gastrointestinal disorders in people with Down's syndrome: An overview
Summary of conference paper by Dr Charlie Charlton at a conference 'More Medical Issues in Down's syndrome' - held at The Royal Society of Medicine, London, on April 26th 2001 (pdf).