A Rare Disease Research Coordinator at Birmingham Children’s Hospital (BCH) recently consented her 1,000th participant to the pioneering 100,000 Genomes Project.

Jess Kainth is a Rare Disease Research Co-Ordinator at BCH and has been a key part of the West Midlands Genomic Medicine Centre (WMGMC), which has recruited over 10,000 participants across its 16 Trusts.

Jess has a degree in Medical Science and began as an Intern in the Dermatology Department at BCH in 2015, becoming Rare Disease Coordinator in 2016. She is moving to London later this year to become a Physician’s Associate, and hopes to specialise in paediatrics.

“My job involves screening clinics and consenting patients, and what I really love about my role in the 100k project is the variety,” explained Jess.

“Everyone’s story is different, and it puts our little issues into perspective.”

“100k is going to change the world of medicine, particularly once results are returned.

“I’m really proud to have worked on the project, and I’m gutted that I won’t see it come into the mainstream, but excited for the future.

“I definitely want to keep involved with genomics and will always be a big advocate of genomic medicine whatever field I specialise in.

“I’d really like to thank Larissa Kerecuk (the 100k lead at BCH) and Celia Moss. I’m grateful for the opportunities that they have both given me. Celia introduced me to the project and supported me in doing consent training, and now I’ve consented 1,000 participants!”

There are three Rare Disease Research Coordinators at BCH, as well as a Genomics Assistant.

BCH have been leading contributors to the WMGMC, comprised of 16 Trusts, including Birmingham Women’s and Children’s NHS Foundation Trust, which runs BCH.

The 100,000 Genomes Project is recruiting patients with eligible rare diseases and their families, as well as individuals who have certain cancers, to collect and sequence their genomes (the complete set of a person’s genes).

Nationally, over 50,000 genomes have already been sequenced.

The WMGMC is one of 13 centres across England recruiting to the project, and is the second largest recruiter overall, as well as the leading recruiter in terms of cancer patients.

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