Lenira Moraes
Systemic Lupus Erythematosus
(S L E )
-perspectives for a population - based registry in Sao
Paulo city, Brazil
M o r ta lity a n d m o r b id ity r e g is tr ie s a r e f u n d a m e n ta l in
h e a lth r e s e a r c h a n d in h e a lth s e r v ic e s a d m in is tr a tio n .
T h e r e a r e g o o d m o r ta lity r e g is tr ie s in S a o P a u lo . H o w
-e v -e r m o r b id ity r e g is tr ie s a r e f e w . F o r in f e c tio u s d is e 'a s e s th e
E p id e m io lo g ic S u r v e illa n c e S y s te m p r e s e n ts v e r y r e lia b le
d a ta .
R e g a r d in g c h r o n ic d is e a s e s o n ly th e c a n c e r r e g is tr ie s
o f s o m e b ig c itie s a r e p o p u la tio n - b a s e d , a n e x a m p le is th e
" R e g is tr o d e C a n c e r " b a s e d a t " F a c u ld a d e d e S a u d e P u b lic a
U S P " . I t s e e k s f o r c a s e s in d ia g n o s tic a n d tr e a tin g c e n te r s a r e
r e c ie v e s r e p o r ts f r o m d o c to r s a s w e ll. T h e r e g is tr y 's h u m a n
r e s o u r c e s a r e a d o c to r , a s ta tis tic ia n a n d tw o s e c r e ta r ie s th a t
r e c e iv e , c o n s o lid a te a n d a n a ly s e d a ta . T h e r e g is tr y h a s h a d
d if ic u ltie s , m a in ly b e c a u s e o f im p o r ta n t h u m a n r e s o u r c e s la c k .
I t w o u ld b e im p o r ta n t to e s ta b lis h r h e u m a tic d is e a s e s
d a ta b a n k s d u e to th e ir h ig h d is a b iltie s r a te ; s c a r c e a e th io lo g ic
k n o w le d g e a n d th e e x is te n c e o f e f f e c tiv e c o n tr o l tr e a te n ts th a t
c a n p r e v e n t c o m p lic a tio .
S L E f u lf ils th e c r ite r ia a b o v e in a s p e c ia l w a y . T h e f o
l-lo w in g r e a s o n s ju s tif y a n d r e in f o r c e a p o p u la tio n b a s e d r e g is
-tr y o r S L E in S a o P a u lo c ity :
I.E x is te n c e o f c le a r d ia g n o s is c r ite r ia - T h e A m e r i-c a n R h e m a to lo g y A s s o c ia tio n c r ite r ia ( A R A c r ite r ia ) a c c e p te d
in te r n a tio n a ly b y a ll r h e u m a to lo g y s e r v ic e s .
2 . O n ly a f e w p u b lic m e d ic a l c e n te r s c o n c e n tr a te th e
d ia g n o s e s a n d tr e a tm e n t o f a lm o s t a ll c a s e s in S a o P a u lo a n d
h a v e h ig h te c h n ic a l le v e l c o m p a r a b le to d e v e lo p e d c o u n tr ie s
c e n te r s , n a m e ly " H o s p ita l d a s C lf n ic a s d a F a c u ld a d e d e
M e d ic in a d a U n iv e r s id a d e d e S a o P a u lo ( H C - F M U S P ) , S a n ta
C a s a d e S a o P a u lo ( S C - S P ) , H o s p ita l S a o P a u lo d a E s c o la
P a u lis ta d e M e d ic in a ( E P M ) , H o s p ita l d o S e r v id o r P u b lic o
E s ta d u a l ( H S P E ) , H o s p ita l d o S e r v id o r P u b lic o M u n ic ip a l
( H S P M ) , H o s p ita l H e 1 io p o lis " .
3 . E x is te n c e o f a R h e u m a to lo g y A s s o c ia tio n c o n g r a g a
-tin g m o s t o f th e r h e u m a to lo g is ts .
4 . E x is te n c e o f a n a c tiv e p a tie n ts a s s o c ,ia tio n .
B e a r in g th o s e a s p e c ts in m in d , a m e e tin g o f r e p r e s e n ta
-tiv e s o f D e p a r tm e n t o f R h e u m a to lo g y ( H C - F M U S P ) , D e p a r
t-m e n t o f P r e v e n tiv e M e d ic in e ( F M U S P ) a n d D e p a r tm e n t o f
S o c ia l M e d ic in e ( S C - S P ) d e c id e d to te s t a c a s e R e g is tr y S y s
-te m to r u n a t o u tp a tie n ts s e r v ic e o f H C - F M U S P , c o lle c tin g
th e d a ta b e llo w f r o m m e d ic a l r e c o r d s a n d c o m p u te r in f o r m a
-tio n s y s te m :
A - N a m e , a g e , d a te o f b ir th , s e x , r a c e , p la c e , o f b ir th ,
s c h o o lin g le v e l, o c c u p a tio n a n d a d r e s s .
B - C r ite r ia o f th e p a tie n t.
C - D a te o f th e la s t v is it to H o s p ita l.
4 . P r e s e n t s itu a tio n o f th e p a tie n t: a liv e , d e a d ( c a u s e ) ,
k id n e y f a ilu r e , a s o c ia te d r h e u m a tic d is e a s e ( s ) .
T h e s a m p le h a s 6 0 0 c a s e s a n d 1 0 0 p a tie n ts w ill h a v e
th e ir id e n tif ic a tio n d a ta c h e c k e d b y a d o c to r . A c c o r d in g to
o u r e x p e r ie n c e id e n tif ic a tio n d a ta o f r a c e , s c h o o lin g le v e l a n d
o c c u p a tio n d o n o t h a v e th e e x p e c te d r e lia b ility .
T h e d a ta h a v e b e e n lo a d e d in a E P I - I N F O d a ta b a n k .
