St. Lu­cia pi­lots New­born Screen­ing Pro­gramme for Sickle Cell Dis­ease

The Star (St. Lucia) - - LOCAL -

Since 2010, the Sick­Kids-Caribbean Ini­tia­tive (SCI) has for­malised part­ner­ships be­tween pae­di­atric can­cer/ blood dis­eases spe­cial­ists at Sick­Kids and Caribbean pro­fes­sion­als, through train­ing and ed­u­ca­tion, to sup­port the early iden­ti­fi­ca­tion and op­ti­mal treat­ment of Caribbean chil­dren with th­ese dis­or­ders. Ad­di­tion­ally, through col­lab­o­ra­tion with the Uni­ver­sity of the West Indies, lo­cal Min­istries of Health and hos­pi­tals, and the pri­vate sec­tor, SCI has re­alised fi­nan­cial sup­port to im­prove in­fra­struc­ture, as­sist the devel­op­ment of lo­cally-ap­pro­pri­ate treat­ment stan­dards, and heighten ad­vo­cacy.

SCI has since moved a step fur­ther: in Fe­bru­ary of this year, a pi­lot project in Saint Lu­cia and Ja­maica fo­cused on im­prov­ing new­born screen­ing (di­ag­no­sis, treat­ment and mon­i­tor­ing) for Sickle Cell Dis­ease (SCD), the most com­mon ge­netic dis­or­der in th­ese is­lands.

The Sick­Kids-Caribbean Ini­tia­tive (SCI): en­hanc­ing ca­pac­ity for care in pae­di­atric can­cer and blood dis­or­ders, is a not-for-profit col­lab­o­ra­tion be­tween the Hos­pi­tal for Sick Chil­dren (Sick­Kids) in Toronto, Canada, and six coun­tries in the Caribbean, that strives to im­prove the out­comes and qual­ity of life for chil­dren with can­cer and blood dis­or­ders.

Early di­ag­no­sis of SCD is es­sen­tial to pre­vent se­vere ill­ness and early deaths. Lab­o­ra­tory new­born screen­ing for SCD is a world­wide rec­om­mended stan­dard of care since sim­ple cost-ef­fec­tive in­ter­ven­tions, such as daily an­tibi­otic us­age and spe­cial vac­cines, can do much to pre­vent this early ill­ness and death, and clear signs and symptoms of the dis­ease are typ­i­cally de­layed un­til 6 months of age or later (due to the rel­a­tive pro­tec­tion of fe­tal (HbF) haemoglobin).

In the Caribbean, a limited Ja­maican screen­ing pro­gramme be­came es­tab­lished in 1973 and Saint Lu­cia com­menced uni­ver­sal screen­ing in April 1990 through the ef­forts of the St. Lu­cia Sickle Cell As­so­ci­a­tion. The other English-speak­ing Caribbean is­lands have not yet com­menced rou­tine new­born screen­ing.

The fact that St. Lu­cia al­ready has a na­tional new­born screen­ing pro­gramme for SCD makes it an ideal can­di­date for the pi­lot, and as there are con­cerns re­lated to the method which utilises blood from the um­bil­i­cal cord (a mix of both baby and mother’s blood) which may ac­count for er­rors in di­ag­no­sis, as well as to the ef­fi­ciency and rel­a­tive cost of the testing method, we stand to ben­e­fit fur­ther from the in­for­ma­tion pro­vided by the pi­lot.

Be­gin­ning with St. Lu­cia and Ja­maica, and then ex­pand­ing to other SCI par­tic­i­pat­ing coun­tries, the project aims to cen­tralise the SCD new­born screen­ing tests, through the Trop­i­cal Me­tab­o­lism Re­search Unit in Kingston, Ja­maica. In­stead of the cur­rent um­bil­i­cal cord blood col­lec­tion method, the pi­lot uses a dry fil­ter pa­per blood spot method, with sam­ples ob­tained di­rectly from the new­born by a heel prick. The fil­ter pa­per sam­ples are then trans­ported to Ja­maica for anal­y­sis.

Re­port­ing of re­sults will be done elec­tron­i­cally to en­sure timely iden­ti­fi­ca­tion of screen- pos­i­tive in­fants who need early in­ter­ven­tion and on­go­ing care.

The project is be­ing rolled out in two phases: for the first 6 months, the ex­ist­ing cord blood sampling sys­tem with lo­cal lab­o­ra­tory anal­y­sis will run con­cur­rently with the dried blood spot method, lo­cal col­lec­tion and anal­y­sis in Ja­maica. Com­par­i­son will be made be­tween the two sys­tems in ac­cept­abil­ity, di­ag­nos­tic ac­cu­racy, cost, turn-around time and de­liv­ery of re­sults. Con­di­tional upon suc­cess­ful im­ple­men­ta­tion of the dried blood and cen­tralised lab testing sys­tem, phase 2 (months 7-12) of the project will com­mence with com­plete re­place­ment of the wet cord blood sys­tem with the val­i­dated dried blood spot sys­tem.

The an­tic­i­pated benefits of the new method, and of the con­sol­i­dated and cen­tralised testing, are sev­eral: im­proved di­ag­nos­tic ac­cu­racy, lower cost due to higher vol­umes and im­proved ef­fi­ciency, and also this method lends it­self to fu­ture ex­pan­sion of the new­born screen­ing panel be­yond SCD to other dis­or­ders such as con­gen­i­tal hy­pothy­roidism, con­gen­i­tal adrenal hyper­pla­sia and cer­tain meta­bolic dis­or­ders.

This com­mu­ni­ca­tion ex­er­cise aims to en­sure that all stake­hold­ers un­der­stand why and how this pi­lot is be­ing con­ducted, and fol­lows HCW (nurses, midwives, doc­tors) train­ing to en­sure proper dried blood spot col­lec­tion and han­dling tech­niques, and to prop­erly pre­pare staff, as well as fam­i­lies, to sup­port and ac­cept the new screen­ing pro­to­col. Any screen­ing pro­gramme de­signed to im­prove na­tional health should be re­viewed and com­pared to in­ter­na­tional stan­dards to con­firm that the best is be­ing achieved. The lessons learnt from this pi­lot will help to rec­on­cile our lo­cal dis­crep­an­cies in the fre­quen­cies of the dif­fer­ent forms of SCD, and com­pare the ac­cu­racy of cord blood di­ag­no­sis to the new method, with a view to de­vel­op­ing a more ac­cu­rate and com­pre­hen­sive pro­gramme to as­sist the chil­dren of St. Lu­cia with SCD. We ex­pect this ap­proach of cen­tral­is­ing di­ag­nos­tic ca­pa­bil­ity will ben­e­fit the re­gion through lower costs and en­hanced avail­abil­ity and ac­ces­si­bil­ity of new­born screen­ing di­ag­nos­tics.

Sick­Kids-Caribbean Ini­tia­tive (SCI): en­hanc­ing ca­pac­ity for care in pae­di­atric can­cer and blood

dis­or­ders.

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