Data-sharing workshop 13th September 2023 (hybrid)

In our first hybrid meeting (hosted and chaired by Prof Bobbie Farsides at BSMS, University of Sussex), we had two fantastic presentations, which touched on the experiences on people and families living with a genetic diagnosis and those living with genetic uncertainty.

Jane Chudleigh presented data on the views of people and families living with a cystic fibrosis diagnosis, families living with the uncertainty of CFSPID, and CF health care professionals, towards proposed changes to CF newborn screening using next generation sequencing.

Tootie Bueser (King’s College Hospital and Guy’s and St Thomas’ Hospital), presented data from her doctoral research on inherited cardiac conditions and risk.

Data-sharing workshop 9th February 2023 (online)

In our first data-sharing meeting we had three fantastic presentations:

Felicity Boardman (University of Warwick) - "Imagining Futures"

Amarpreet Kaur (University of Birmingham) - "Severe Disease in the Context of Germline Genome Editing: Patients' Perspectives"

Kriss Fearon (De Montfort University) - "Imaginaries of Family Life"

We were very pleased to welcome nearly 30 participants, who work internationally in a variety of subject areas and at different career stages. There was much interesting and insightful discussion and debate following the presentations. Thank you to our presenters and to everyone who attended and contributed to the discussions.

This meeting was originally scheduled to be a hybrid meeting, with the in-person element at the University of Birmingham. Unfortunately, this had to be changed due to another clash with the UCU strikes. The decision was made to continue with the meeting but to move it online.

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Data-sharing workshop 25th November 2022

Unfortunately, we had to cancel this meeting as it clashed with the UCU strikes.

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First SERG Network member meeting 9th June 2022

We held our first meeting of network members (online) on the 9th June 2022. The purpose of this meeting was to discuss what network members would like to get from the network, the format of data-sharing workshops, and how these workshops will operate on a practical level (including finalising our code of conduct for presenters and attendees).