Summary of our activities

Membership

There are two types of membership, full and associate. Please see below for full details. Currently there are 56 full members and 43 associate members of the consortium. These include almost all the European Centres offering PGD/PGS and those of many other countries including Australia, USA, South Africa, Thailand, UAE, Japan, Brazil, Korea, Taiwan, Argentina, Pakistan, Canada and Israel.

ESHRE Scientific Officer

ESHRE has employed a scientific officer, Veerle Goossens, to deal with many of the consortium tasks. Please email Veerle.Goossens@eshre.eu with any inquiries.

Data Collection

Our main task in the last 12 years has been to collect comprehensive data on PGD and PGS cycles. We have published 10 papers summarising the collected data (see the consortium publication link for the pdfs of these papers). A summary of the data is presented at ESHRE each year and published in Human Reproduction. We use a special filemaker Pro data base to collect data.

Guidelines

We have produced guidelines on PGD/PGS (see consortium publication link for pdf of this paper). 

Communication

We feel it is important to have regular communication with registered centres. We do this via the web site and meetings.

Web site

We are continually updating our web site. All training courses, meetings, newsletters and pdfs of our papers are listed on the web site.

Meetings

We hold closed annual meetings (only members of registered centres can attend) on the Saturday before the ESHRE annual meeting to discuss the data and any other issues involving PGD/PGS.

Training and education

We hold closed (only members of registered centres can attend) and open training courses. 

Working Groups

Accreditation

This is being chaired by Katerina Vesela. Accreditation is very important for diagnostic labs (and obligatory in some countries) and ideally all consortium members should be accredited. There is no doubt that this will be necessary in every country in time, but some countries do not have accreditation. We ran a very successful course on Quality Management and Accreditation process in PGD clinics and laboratories in Brno, Czech Republic and London, UK. We will be holding the same congress in Athens 2011. The steering committee is currently writing a guide to accrediting a PGD lab.

Misdiagnosis

Joanne Traeger-Synodinos is chairing this working group. A paper on the causes of misdiagnosis is in press in Human Reproduction and will be available to download from the web site as soon as it has been published. The group are looking at confirmation of the diagnosis in untransferred embryos.

Guidelines

Gary Harton was running the guidelines working group so that we could update the guidelines we published in 2004. ESHRE have produced guidelines for writing guidelines. This has been done and the guidelines can be read on this website.

Database

Celine Moutou is chairing the database working group. The database group is working on the results of pregnancies and babies. We plan to develop an online database to facilitate the use for all contributing centers. This should be finished by the end of 2011. 

A new database is in preparation for the outcome of transfer of thawed embryos. This will only consider embryos which were frozen after biopsy and PGD.

PGS / Aneuploidy screening

The work of this working group has finished. ESHRE have set up a task force on PGS to try and set up a multi centre randomised control trial for PGS using arrays on polar bodies. A pilot study is being set up to determine the feasibility of this study.

Certificate

After submitting data, full members are sent an annual certificate to show they are Consortium members for that year.

Follow up of babies

There are two parts to this study. A retrospective study is underway to follow up PGD babies. In the future we hope to set up a prospective study. 

Quality assurance

In 2008 we set up EQA for FISH and PCR.

FISH EQA

Twenty five centres took part in the pilot which was organised by Ros Hastings, UKNEQAS/CEQA (UK National External Quality Assessment Scheme/Cytogenetics European Quality Assessment), Joyce Harper, Alan Thornhill and Sjoerd Repping. The pilot was in two parts. Part one involved assessing two sets of images (PGD and PGS) via the web and participating centres had to score the images. Part two involved submitting a report for one previously reported PGD or PGS case. At the moment it is envisaged that participating centres do the EQA annually.

Members of the EQA for FISH PGD working group and assessors:

Ros Hastings, Joyce Harper, Alan Thornhill, Edith Coonen, Paul Scriven

PCR EQA

In collaboration with UK NEQAS (UK National External Quality Assessment Scheme)

The planned scheme will rely on sending ‘parental’ DNA samples and single cells from commercially available cell lines to participating labs to carry out tests for the diagnosis of cystic fibrosis and later for other disorders. The pilot will run in 2009. DNA from ‘parental’ and ‘affected relative’ cell lines will be sent to participating labs, participating labs will return a PGD feasibility report for the ‘family’, and then single lymphocytes from ‘offspring’ cell lines will be sent to participating labs who have a protocol that can be applied to the ‘family’.

Members of the EQA for molecular PGD working group:

Sandi Deans (UK), Martine De Rycke (Belgium), Francesco Fiorentino (Italy), Gary Harton (USA), Céline Moutou (France), Pamela Renwick (UK), David Robinson (UK), Sioban SenGupta (UK), Jan Traeger-Synodinos (Greece)