Irish MPS Families – Important date for your diary
MPS Patient Day will take place on March 29th 2014
in the Glenroyal Hotel, Maynooth, Co Kildare.
We will have several speakers.
Doctor Greg Pastores the new Adult Metabolic Doctor in the Mater Hospital will be speaking along with invited guest speakers.
It will be very informative day for all MPS/ML Patients, Children & Adults.
We hope to have childcare facilities in place too.
We will post more information on speakers, Topics, etc. soon.
Keep March 29th 2014 free to attend in your diary.
Look forward to seeing as many families as possible.
MPS Awareness Day – Coffee Morning
in Aid of
Aoibhe O’Connor and The Irish MPS Society and MPS Awareness Day
Tuesday 14th May from 09.30 am to 12.00 pm
Kileagh Community Hall, Kileagh Co Cork
Pop in for Tea, Coffee, Cakes and a Chat
plus a raffle with wonderful prizes
Please come and support Aoibhe and the MPS Society
Newborn Screening Cards to be disposed of to meet Data Protection requirements
Newborn Screening Cards to be disposed of to meet Data Protection requirements Thursday 17th January 2013. The HSE and the Department of Health today, Thursday 17th January 2013 announced that an archive of newborn bloodspot screening cards dating from 1984-c.2002 is to be disposed of to meet Data Protection regulations.
The screening cards relate to the National Newborn Bloodspot Screening Programme, which tests all newborn infants for a range of conditions.
The test, commonly known as the Heel Prick Test, is usually carried out 3-5 days after birth, and takes a small blood sample via a prick to the baby’s heel. This sample is collected on a screening card and tested for the following conditions: Phenylketonuria, Cystic Fibrosis, Congenital Hypothyroidism, Classical Galactosaemia, Homocystinuria, and Maple Syrup Urine Disease.
Newborn screening cards are then stored, primarily to allow for follow up tests that may be requested by the child’s family doctor or their medical team during childhood. The screening programme was updated in July 2011, and since that date all parents now give consent for the newborn screening cards to be stored and then disposed of during the child’s 11th year, when the need for follow up tests for that child has reduced significantly. Archived sample cards that are more than ten years old and date from the 1980s to 2002, will be disposed of in 2013 to meet Data Protection requirements. Commenting on this announcement today, Dr Kevin Kelleher, Head of Health Protection, HSE said:
“During 2011, the information and consent processes for parents was updated and enhanced. Parents whose child is having the test now give consent for the test and for the card to be stored for up to 10 years. As part of this process we have received the consent issues for older cards which date back to the mid-1980s, which are in storage.”
The HSE has been asked to ensure that archived newborn screening cards that are more than ten years old, and date from the 1980s to 2002, are disposed of. This is because no explicit consent for storage was given at the time these historic tests were done, and therefore Data Protection legislation requires the HSE to not continue to store them.” Any person who prefers that their newborn screening card is not disposed of can have their card returned to them. A simple application form can be downloaded from the website www.newbornscreening.ie and posted to the screening programme along with the relevant identification. The newborn screening card will be retrieved from the screening card storage as soon as possible and returned. The timeframe for returning cards will depend on the volume of requests, but we anticipate that this process will be ongoing until mid 2013. Cards can be requested by the parent or guardian of the infant screened.
If the infant screened is now over 18, the card can be requested by themselves, or by their next-of-kin if they are deceased. Screening Card return requests must be received by 31st March 2013. A parent with privacy concerns about the continued storage of a card collected from 2002-July 2011 can request that their card is disposed of at anytime using the same contact details. The disposal of remaining cards will take place after all card return requests have been fulfilled. Forms to request a newborn screening card return or disposal are available on www.newbornscreening.ie or by calling 1850 24 1850. Some Irish health research and patient organisations have in the past expressed an interest in accessing and storing newborn screening cards to further their research into health conditions. The HSE and Department of Health have no objection to this, but within Data Protection regulations cannot continue to act as a repository for screening cards. The HSE has invited a range of health organisations to submit details of governance arrangements for such storage or research uses for screening cards. Where parents provide the HSE with explicit written consent, and where appropriate storage and governance arrangements are in place, cards can be forwarded to such organisations. More details on this option will be posted on www.newbornscreening.ie as the HSE receives proposals from research organisations.
Options open to parents/guardians re newborn screening cards Do nothing and you card will be disposed of for children born between 1989 – 2002
Fill out and return the form and the card will be returned to you Visit www.newbornscreening.ie and read about research/storage options as they arise
Information on Stored Newborn Screening Cards
All babies born in Ireland are screened for 6 rare conditions soon after birth, so that babies with rare conditions can be given early and appropriate care. This is known as the Heel Prick Test. It involves taking a few drops of blood from the baby’s heel onto a screening card for testing. The screening programme was updated in June 2011 and screening cards are now stored with parental consent for 10 years after the test is completed.
The National Newborn Bloodspot Screening Programme has older screening cards from all heel prick tests carried out since 1984 in storage. To comply with national and EU Data Protection law, these screening cards from babies born between 1984 and 2002 will be disposed of during 2013. From 2013, this will be done every year for cards over 10 years old.
Options for Screening Cards
Below are the options available to parents or card owners, and you can read a more detailed question and answer sheet http://www.hse.ie/eng/services/healthpromotion/newbornscreening/newbornbloodspotscreening/disposal/disposalqa.html
- For Babies born from 1984 – 2002: If you are happy for your or your child’s screening card to be safely disposed of in 2013, take no further action.
- For Babies born from 1984 – 2002: If you prefer that the screening card is returned to you and not disposed of in 2013, you can request the card to be returned. The request must come from the parent or guardian of the baby who was screened, or from the person screened if they are now aged over 18 years, or by their next-of-kin if they are deceased. http://www.hse.ie/eng/services/healthpromotion/newbornscreening/newbornbloodspotscreening/Publications/returnform.pdf
- For Babies born from 2002 to July 2011: You may prefer that your child’s screening card is not stored for 10 years and can request that the screening card is disposed of at any time. http://www.hse.ie/eng/services/healthpromotion/newbornscreening/newbornbloodspotscreening/Publications/disposalform.pdf
You can also request your child’s card to be returned to you, even though it is not due for disposal in 2013 – use the form http://www.hse.ie/eng/services/healthpromotion/newbornscreening/newbornbloodspotscreening/Publications/returnform.pdf
To request a card return, or a card disposal:
- Download one of the forms on on this page or call 1850 24 1850 to request a form to be posted to you
- Complete and return the signed form and copy of identification documents mentioned in the form.
- Requests must be received on or before March 31st 2013.
Dates for Your Diary 2013
May Bank Holiday Weekend Kilcuan, Clarinbridge, Co Galway
03th – 06th May 2013
Remembrance Day in Belvedere House & Gardens, Mullingar, Co Westmeath
Saturday, 31st August 2013
Christmas Party in The Glenroyal Hotel, Maynooth, Co Kildare
Saturday, 23rd November 2013
More details for each of these upcoming events to follow in due course
Christmas Cards Now On Sale
Yes its that time of year once again when our Christmas Cards go on Sale
Please click on the link to download the order form Christmas Card Order Form 2012
REMEMBERENCE DAY 2012
Our annual Rememberence Day will take place on Saturday 01st September 2012 in Belevedere House and Gardens, Mullingar, Co. Westmeath
If you would like to join us please email firstname.lastname@example.org
Our Christmas Party will take place on Saturday December 01st 2012 from
12.30 – 5pm in the
Maynooth, Co. Kildare
As usual we will have hot buffet and dessert – therefore it is essential we have fairly accurate numbers for the hotel. Santa will want to know how many children he will see. So perhaps you would be kind enough to email us at email@example.com on or before Friday 23rd November 2012 indicating how many adults/ children we can expect (extended family and friends are most welcome but please let us know).
Christmas Cards will also be available for sale on the day and we look forward to your support
Fun Day is a Thriller
This family day will feature dancers, stilt walkers, a bronco bull, face painting and much more. And it all takes place to the sounds of Michael Jackson’s greatest hits.
Funds are in aid of the Irish MPS Society.
Christine Dowling who is a massive Michael Jackson fan and also has Morquio (MPSIV) is organising this event if any of our families are in the area of Halston Park on Saturday please come along and join in the fun.
Annual Kilcuan Weekend Away 2012
04th May – 07th May 2012 Kilcuan weekend away
Click for more details MPS Kilcuan family weekend 2012.
See link to venue below: