| ASPECTS |
|
||||||||
|
|
|
|
|
|
|||
Contents
Research
Falling under the TS spell
Editor’s note – There has been some comment from members that by publishing research protocols and updates in ASPECTS means that the Society endorses that research. This is not necessarily correct - the aim is to inform members of current research in order to enable them to make an informed choice as to whether or not they wish to participate in research projects.
Update from Dr Julia Ostberg
The study is going well and we are very grateful to all those women who have already agreed to take part, and hope that we can keep up the momentum over the next few months. We are just about to start on the next stage of the study which will run in parallel and involves more vascular testing - we are collaborating with colleagues at Great Ormond Street for this.
[Ed’s note – apologies for not including Dr Ostberg’s contact details in the last issue. They are :-
Dr Julia Ostberg , Department of Endocrinology,
South House, Middlesex Hospital, Cleveland Street
London W1N 8AA Tel 020-7380-9449:]
Dr Ostberg recently presented an interesting abstract to delegates at the recent Society for Endocrinology annual meeting. The abstract was on the preliminary research findings of work that has been going on in relation to growth hormone treatment and the effect on hearing in women with TS. Dr Ostberg informs us that the abstract presented showed that the preliminary data suggested that women who received growth hormone treatment may have a lower incidence of one type of hearing loss, sensorineural hearing loss. These findings are being further investigated at present.
Dr Ostberg is in the process of writing a paper which with luck should not take too long to publish and she will delighted to cover it fully in ASPECTS for us after that.
Regular readers of ASPECTS will know that this study, which has been recruiting participants since 1999, aims to examine the impact on final height, if any, of oxandrolone and the timing of oestrogen induction. Neither treatment is new in the treatment of TS, both have been used for decades. It is known that oxandrolone makes girls grow faster but whether it makes them ultimately taller, as adults, has not been proven. Similarly, there is a suggestion that delaying oestrogen treatment may improve final height, although this is contrary to recent findings in Glasgow. Obviously, neither families nor clinicians would wish to delay treatment unnecessarily and this uncertainty emphasises the need for a large-scale disciplined study such as this, in order to identify the optimal use of both oxandrolone and oestrogen. The study’s 3-year recruitment period will come to an end on 31 December 2002, by which time it is expected that the final number of girls enrolled will be approaching 100. The study is already the largest of its kind ever carried out in TS in the UK but there is no upper limit to the number of participants. In fact, it is vital that as many girls as possible are enrolled before the end of the year. The ongoing success of the study is due to the generosity of all those girls and families who have already generously agreed to participate. The study investigators, on behalf of the British Society for Paediatric Endocrinology & Diabetes (BSPED), are making a final request for participants, in the closing few weeks of recruitment.
Girls eligible for enrolment are aged 7-14 years, are receiving growth hormone and have never received oxandrolone or oestrogen treatment. Even if you have previously declined to participate, you may still be eligible. If you would like further information, please contact your paediatric endocrinologist or the study’s Research Assistant (see below for details) without delay.
Emma-Jane Gault, Department of Child Health, Royal Hospital for Sick Children, Yorkhill, Glasgow, G3 8SJ
Tel: (0141) 201 6952
Fax: (0141) 201 0837
Email: EJ.Gault@clinmed.gla.ac.uk
Prof David Dunger & team, Addenbrookes Hospital, Cambridge.
This study has been extended to March 2003 and the researchers still need more volunteers to help in this important research. A number of TSSS members have already taken part and written about their experiences in past issues of ASPECTS. If you would like to know more about this research and possibly volunteer then you can contact Dr Rakesh Amin direct and he will give you more information, you can also read about it in past issues of the newsletter. Contact Dr Amin on 01223 763404 or email ra249@cam.ac.uk
Earlier this year I was asked by Ferring Pharmaceuticals to undertake a project with the TSSS, to produce a book on TS for girls and women with TS, parents, carers and healthcare professionals. Little did I know what was in store for me and my editorial colleague Jane!
I have worked with a number of different charities and organisations to produce information materials and booklets, but I knew this would be different as soon as I started to work with Arlene and Lynne to put the publication together. Initially, I think they were worried that someone who knew nothing about TS was coming to take over their project and spend all the promised funding from Ferring on expensive writers and project managers! I reassured them this wasn’t the case and asked for a ‘wish list’ for their dream book instead.
Arlene put together a list of everything she could possibly want for a book on TS which I think she expected to be cut by half – however we were able to surprise her and Lynne by saying that we could do everything they wanted, plus deliver as many copies of the book as they needed, all within a relatively short time frame to launch at the BSPED… if we could count on them to provide comments and approval at each stage as quickly as possible.
They surprised me! I have never worked with people who are as dedicated and enthusiastic about a subject and passionate about getting things done within agreed times. I began working with them on this project in late May, we had planned the content by June and began writing by the end of July. Four months later, and many hundreds of e-mails, input from a huge number of specialists on TS, a wonderful designer and printer at Harlow Printing and comments from everyone who needed to be included, the book was finished in time to launch at BSPED in Plymouth.
This was a huge undertaking by all involved and I would really like to thank everyone for sticking to agreed schedules in order to produce the book, particularly the busy consultants and specialists. I have really enjoyed working on this project with all the team, especially Arlene and Lynne, Ruth from Ferring and John and Christine (Bob!) at Harlow Printing. I am now completely under the spell of the TSSS and will continue to support it as best I can over the coming years.
Helen, PR Consultant and Project Co-ordinator
Home | What is TS ? | Information | About Us | Links | Latest News
All web pages copyright © TSSS(UK) unless otherwise stated. Please read our copyright and disclaimer page