First pa­tients ar­rive at UAE-funded re­search cen­tre in fa­mous Lon­don chil­dren’s hos­pi­tal

▶ Medics at the Zayed Cen­tre in the Great Or­mond Street Hos­pi­tal for Chil­dren are de­vel­op­ing new treat­ments

The National - News - - NEWS - ARTHUR SCOTT-GED­DES

A UAE-funded re­search lab­o­ra­tory at the world’s most fa­mous chil­dren’s hos­pi­tal wel­comed its first pa­tients, mark­ing an­other mile­stone in the cen­tre’s mis­sion to find cures for rare dis­eases in young peo­ple.

Pa­tients and re­searchers walked through the doors of the Zayed Cen­tre for Re­search into Rare Dis­ease in Chil­dren at Lon­don’s Great Or­mond Street Hos­pi­tal for the first time this week.

“Ev­ery­one de­serves hope,” said Gla­dys, the mother of Omar, 3, from Dubai, who was born pre­ma­turely with a heart de­fect and is re­ceiv­ing treat­ment at the hos­pi­tal. “Alone we are rare but with your sup­port, to­gether we are strong.”

For new pa­tient Aysha, 6, the spe­cial­ist treat­ment avail­able at the re­search cen­tre is vi­tal.

Aysha, also from the UAE, trav­els to the hos­pi­tal ev­ery two weeks for in­ten­sive treat­ment after she was found to have a pi­lo­cytic as­tro­cy­toma, a rare type of tu­mour.

Though be­nign, it keeps com­ing back and puts pres­sure on Aysha’s brain, caus­ing seizures and prob­lems with her vi­sion.

She is given an in­fu­sion to help re­duce the size of the tu­mour and re­lieve the pres­sure on her brain. A med­i­cal de­vice called a ven­tricu­loperi­toneal shunt is some­times used to drain ex­cess fluid.

Doc­tors de­scribe Aysha as “an ex­tremely car­ing, charis­matic and coura­geous young girl who has touched the lives of ev­ery­one with her en­er­getic twirling and non-stop smil­ing”.

The cen­tre, a joint ef­fort be­tween the hos­pi­tal and Univer­sity Col­lege Lon­don, brings pa­tients and their fam­i­lies to re­searchers who are lead­ing the search for cures for rare dis­eases. Re­search in­cludes ge­nomics, cell ther­apy and re­gen­er­a­tive medicine.

An­drew Tay­lor, clin­i­cal di­rec­tor of op­er­a­tions at the hos­pi­tal, said the cen­tre al­lowed doc­tors to “re­ally be­gin to take for­ward our un­der­stand­ing of ge­net­ics in rare dis­eases and the treat­ments we can de­velop to help cure some of them”.

“The idea of the re­search cen­tre is to con­vert those new treat­ments, where we’ve treated one or two pa­tients, into help­ing more and more chil­dren and their fam­i­lies,” Prof Tay­lor said.

The re­sult of a July 2014 gift of £60 mil­lion (Dh283m) from Sheikha Fa­tima, Mother of the Na­tion, the cen­tre was com­pleted in July and in­au­gu­rated by Sheikh Theyab bin Mo­hamed.

“We are hugely grate­ful to the Abu Dhabi royal fam­ily for ev­ery­thing they’ve done,” Prof Tay­lor said.

He said that more than 6,000 dis­eases were clas­si­fied as rare.

“The thing about rare dis­eases is that they’re not ac­tu­ally that rare,” he said. “One in 17 peo­ple will suf­fer from a rare dis­ease at some point in their lives.”

The new labs at the cen­tre, with room for about 140 re­searchers, are just be­low ground level and are vis­i­ble from the street and to pa­tients in the build­ing.

“I think this is a real first,” Prof Tay­lor said.

Most med­i­cal re­search lab­o­ra­to­ries are of­ten sep­a­rated from the hos­pi­tals and pa­tients they serve and are not eas­ily ac­cessed by the pub­lic.

Dr Moritz Haneklaus, one of the first re­searchers to move into the labs at the cen­tre, said he was still get­ting used to work­ing in such an open and vis­i­ble en­vi­ron­ment.

“It’s about invit­ing the pub­lic in,” said Dr Haneklaus, who is part of a team study­ing brain de­vel­op­ment and brain dis­eases us­ing stem cell mod­els.

He said the cen­tre was ideal “be­cause you have ac­cess to the hos­pi­tal as well as great re­search fa­cil­i­ties”.

More than 300,000 pa­tients visit the UK’s first ded­i­cated chil­dren’s hos­pi­tal each year and more than 1,000 pa­tients from the UAE have been treated there in the past eight years.

The Zayed Cen­tre build­ing, de­signed by ar­chi­tects Stan­ton Williams, was built to meet the needs of pa­tients and re­searchers.

The first sci­en­tists ar­rived to take up their posts at the new labs on Mon­day.

They will work be­neath a mu­ral de­signed by Bri­tish artist Mark Titch­ner, based on the words of the Amer­i­can au­thor and ac­tivist He­len Keller, who con­tracted a dis­ease when she was 19 months old, leav­ing her deaf and blind.

The in­scrip­tion “To­gether we can do so much” is em­bla­zoned over a de­sign based on Ara­bic script and in­ter­na­tional flight lines.

One in 17 peo­ple will suf­fer from a rare dis­ease at some point in their lives AN­DREW TAY­LOR Clin­i­cal di­rec­tor of op­er­a­tions, Great Or­mond Street Hos­pi­tal

Stephen Lock / The Na­tional

An­drew Tay­lor, clin­i­cal di­rec­tor of op­er­a­tions at the hos­pi­tal, said the cen­tre al­lowed doc­tors to un­der­stand the role of ge­net­ics in rare ill­nesses

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