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 MonzaUniversità di Milano Bicocca

DESIO : July, 9°-2016

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)

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)

“SCD” and national/international cooperation in “subequatorial area”:

a challenge to reduce U5-Mortality Rate as claimedby WHO and UNESCO on 2006

“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

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

INTERNET PORTAL TO SUPPORT INTERNATIONAL COOPERATION FOR DEVELOPMENT

Internet PortalBase access and common information

Video-conferenceand chat services

E-Learningand knowledge

management Services

OPENEMRHOSPITAL

Management Software

Request management and ticketing services

Help Desk and Operational Support

DATA SENT From SCD DBase

Italian Station

AFRICAN STATIONS with SCD

Data base

RXDB

ST1

ST2

ST3

ST4ST5

**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

DATA SENTFrom SCD DBase

Italian Station

AFRICAN STATIONS

with SCD Data

Base

RXDB

ST1

ST2

ST3

ST4ST5

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 possibleamong the stations in Uganda, Tanzania and Italy and will allow periodical analyses of the patients “follow-up”

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

0-544%

>5-1041%

>10-1815%

>180%

“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

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

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)