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Italian cooperation **
in subequatorial African areas at
high incidence of “sickle cell disease” (SCD):
a project of curat...
SCD “Scenario” in the world on 2016
 SCD is the most diffuse
“inherited” and severe
hemoglobinopathy with high
“morbidity...
Scenario in Tanzania on 2015
• SCD birth prevalence /year:
6-10 per 1000 births (around 20.000)
• Death of SCD children/ye...
“SCD” and national/international cooperation in
“subequatorial area”:
a challenge to reduce U5-Mortality Rate as claimed
b...
“PHASE 1” project : 2014-2016
Areas and hospitals :
in UGANDA ( S.M. Lacor hospital) ;
in TANZANIA (**BMC -Mwanza,
**Miyuj...
INFORMATICS TOOL : a strenght point
• The system was specifically designed to allow health
professionals :
 to monitor pa...
INTERNET PORTAL TO SUPPORT INTERNATIONAL
COOPERATION FOR DEVELOPMENT
Internet Portal
Base access and common information
Vi...
DATA SENT
From SCD DBase
Italian Station
AFRICAN
STATIONS
with SCD
Data base
RX
DB
ST1
ST2
ST3
ST4
ST5
**Patients data are...
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...
Data Base Format :
at first visit and during the follow up evaluation
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
AGE distribution of the enrolled SCD patients
0-5
44%
>5-10
41%
>10-18
15%
>18
0%
“PHASE 2” project (2016-2018):
cure of SCD by bone marrow transplant (BMT)
 With continuous standard treatment (Hydroxyur...
Our BMT STRATEGY in “sub-equatorial area”
 Giving our scientific and practical support by our professionals in setting up...
OUR THANKS
To the involved Italian Associations in MONZA :
 Help 3 (Assunta Betty , Gianni Rebeschini)
 ASOSGT (Daniele ...
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Sickle cell disease” (SCD): a project of curative treatment and informatics technology platform

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

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Sickle cell disease” (SCD): a project of curative treatment and informatics technology platform

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 10. Data Base Format : at first visit and during the follow up evaluation
  11. 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. 12. AGE distribution of the enrolled SCD patients 0-5 44% >5-10 41% >10-18 15% >18 0%
  13. 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. 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. 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)

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