Italian cooperation ** in subequatorial African areas at high incidence of “sickle cell disease” (SCD): a project of curative treatment and informatics technology platform

1. Italian cooperation **
in subequatorial African areas at
high incidence of “sickle cell disease” (SCD):
a project of curative treatment and
informatics technology platform
5
** HELP3 (Monza) www. Help3.it
**A.S.O.S.G.T. (Monza) www. osgt.org
** INFORMATICA SOLIDALE (Milano) www.informatic-solidale.net
Cornelio Uderzo
Ospedale S. Gerardo di Monza
Università di Milano Bicocca
DESIO : July, 9°-2016

2. SCD “Scenario” in the world on 2016
 SCD is the most diffuse
“inherited” and severe
hemoglobinopathy with high
“morbidity and mortality”
 6 millions of neonates/year are
“carriers” of this lifethreatening
anemia (SCD)
 400.000 “ SCD neonates/year are
severely affected
(but 70% of all SCD neonates in the
world are born in Subequatorial
area )
 40 -50% of SCD patients
experienced severe neurologic
disorders within 20 years of age
• ** SCD is a devastating disease
due to :
• Severe anemia
• Neurologic crisis for cerebral
infarcts
• Recurrent and multiorgan pain
crisis
• Very frequent hospital admissions
• Very bad “quality of life”
• High mortality rate in case of
“no treatment” ( more than 80-
90% of death in children below
5 years)

3. Scenario in Tanzania on 2015
• SCD birth prevalence /year:
6-10 per 1000 births (around 20.000)
• Death of SCD children/year = 10.500
• U5 yrs-Mortality Rate for SCD = up to 90%
• U5-MR for Malaria = 10 % (WHO data)

4. “SCD” and national/international cooperation in
“subequatorial area”:
a challenge to reduce U5-Mortality Rate as claimed
by WHO and UNESCO on 2006

5. “PHASE 1” project : 2014-2016
Areas and hospitals :
in UGANDA ( S.M. Lacor hospital) ;
in TANZANIA (**BMC -Mwanza,
**Miyuji -Dodoma , **Muhimbili
hospital –Dar Es Salaam ,**Mbeya
and Zanzibar hospitals)
 Population in the areas of the 5
hospitals : 40.000.000
 SCD children (total number) : 7.000
Principal aim of the project :
 To improve the SCD children
diagnosis and treatment
 To cure SCD children and not only
to prolong their survival
Principal interventions:
 Providing a “2 years treatment”
to at least 400 SCD children
 Donation of diagnostic
instruments
 Providing a common “D base”
for the registration and
management of the patients
 Distribution of common
guidelines for SCD treatment

6. INFORMATICS TOOL : a strenght point
• The system was specifically designed to allow health
professionals :
 to monitor patients from multiple centers as a consulting tool and
e-learning / knowledge management
 to use a platform allowing for the collection of patients’ information and
progress through forms for enrollment data, general and specific medical
evaluations for prospective studies…..
 to give the possibility for video-conferences and chat services

7. INTERNET PORTAL TO SUPPORT INTERNATIONAL
COOPERATION FOR DEVELOPMENT
Internet Portal
Base access and common information
Video-conference
and chat services
E-Learning
and knowledge
management Services
OPENEMR
HOSPITAL
Management Software
Request management
and ticketing services
Help Desk and Operational Support

8. DATA SENT
From SCD DBase
Italian Station
AFRICAN
STATIONS
with SCD
Data base
RX
DB
ST1
ST2
ST3
ST4
ST5
**Patients data are registered in 5
equal Dbase, each for single hospital
**The data should be sent to Italy as an
attached e-mail
**Unfortunately there is not interaction
among Italian station and those in
Uganda and in Tanzania
** A “real time” control of the African
Dbase is not possible by the Italian
station

9. DATA SENT
From SCD DBase
Italian
Station
AFRICAN
STATIONS
with
SCD Data
Base
RX
DB
ST1
ST2
ST3
ST4
ST5
DB1 DB3
DB4
DB5
DB2
CLOUD
**Patients data are registered in 5
equal DBase, each for a single hospital
,but are present in the «cloud» of
Internet
** The controlled data can be sent to
Italy in real time
**A continuous interaction is possible
among the stations in Uganda,
Tanzania and Italy and will allow
periodical analyses of the patients
“follow-up”

10. Data Base Format :
at first visit and during the follow up evaluation

11. Enrollment : cumulative N° of SCD patients per year
0
10
20
30
40
50
60
70
80
90
03 04 05 06 07 08 09 10 11 12 13 14 15 16

12. AGE distribution of the enrolled SCD patients
0-5
44%
>5-10
41%
>10-18
15%
>18
0%

13. “PHASE 2” project (2016-2018):
cure of SCD by bone marrow transplant (BMT)
 With continuous standard treatment (Hydroxyurea) 90% of
patients are still alive at 18 years of age, however there are
many severe “sequelae “ due to the SCD
 BMT is the only “curative treatment “ for SCD children in “high
income countries” (95% of cure rate) but unfortunately there are
only 10 BMT centers in Africa ……..versus 100 in ITALY!
 BMT associated risks:
expected , but managed in centers properly trained in bone marrow
transplant procedures

14. Our BMT STRATEGY in “sub-equatorial area”
 Giving our scientific and practical support by our professionals in setting up a “ BMT
Unit” in one of the 5 participating hospitals (the most adequate)
 To establish a continuous education plan for maintaining a high level of training and
attitude of African transplant team (before and after the BMT Unit start-up) , mainly by :
a) implementing the strength of the “INTERNET PLATFORM “ in order to work “at distance” in
a prospective, clinical management-oriented way
b) focusing on a medically, ethically, and financially justified advanced medical procedures
 to institute a strong collaboration with some Italian Institutes dedicated successfully to
BMT as S. Gerardo hospital, Monza, University of Milan
and S. Raffaele hospital ,Milan, University of Milan
 To build up a strong synergy with other NGOs, mainly those who are involved since many
years in Subequatorial areas of Africa

15. OUR THANKS
To the involved Italian Associations in MONZA :
 Help 3 (Assunta Betty , Gianni Rebeschini)
 ASOSGT (Daniele Scandellari)
 Informatica solidale (C. Tancini, D. Margiotta , M. Battafarano)
To all medical/nurses staff of :
** Lacor Hospital (Uganda);
** BMC (Mwanza ,TZ);
** Mnazi Mmoja H (Zanzibar,TZ);
** St. Gemma H (Dodoma, TZ) ;
** Muhimbili H (Dar Es Salaam, TZ)