Fondation Pierre Fabre

Digital application to assist in the monitoring and management of sickle cell disease

Main beneficiary country:
Congo - Kinshasa

About the sponsor

Genity Sarlu

Genity Sarlu is a start-up dedicated to providing innovative solutions to social problems affecting Congolese and Africans in areas such as health and communication.

Sector: Industrial: Startups, enterprises, etc.

Country of origin: Congo - Kinshasa

The organisation has:

5
Full-Time Equivalents
0
Employee
10
Volunteers
3
Service providers

Initiative overview

Healthcare themes targeted

  • Chronic diseases

Stage of development:

  • Pilot project/testing/trials

Area where initiative is utilised

  • Provincial/regional (in one region of a single country)

Initiative start date

  • 04/05/2019

Financing

Financing method

  • Public (grant/subsidies, call for proposals/call for tender, etc.)

Economic model(s)

  • Subsidies
  • Donations

About the initiative

The first genetic disease in the world, Sickle Cell Disease is characterised as a rare disease or one that people are unaware of. The DRC [Democratic Republic of Congo] is the 3rd country in the world and the 2nd in Africa to bear the socio-economic burden of this disease.

In the DRC the fight against this disease is characterised by: the difficulty of obtaining precise figures; the absence of large-scale action undertaken by the State; the high cost of care ($1,000 to $2,000/disease/year); the lack of trained health personnel and infrastructures lacking the specificities of sickle cell disease (transfusion related, nutritional, surgical and orthopaedic needs, etc.); and a population that is often poorly informed.

Anemiapp therefore aims to solve the problem of caring for sickle cell patients in the city of Kinshasa.

This application brings patients in Kinshasa suffering from sickle cell disease closer to their caregivers in order to monitor their health. It facilitates the provision of treatment and access to health care. Anemiapp is also intended to prevent sickle cell disease through mobile phones, with the patient receiving notifications on health advice and how to avoid attacks.

This application is innovative because it allows a patient with sickle cell disease living in Kinshasa to use their phone to search for places where they can find their treatments without having to travel (blood bank, medicines, etc.) as well as a doctor near to where they live. A pregnant woman with sickle cell disease, a population at risk, 20 to 30% of them dying before or during childbirth, can find a specialist gynaecologist to ensure they are well supported. Young people in Kinshasa can use the Anemiapp application to find out where to get tested in order to avoid giving birth to a child who will also suffer from sickle cell disease.

For this purpose, the Anemiapp application offers the following services:

  • Identification and geolocation of patients with sickle cell disease to have statistics on the evolution of the disease;
  • Follow-up of sickle cell disease patients by doctors with the possibility of tele-advice;
  • Reminder about the health rules to be observed to avoid attacks, which are the main causes of death for sickle cell patients;
  • Information on the consultation times of the health centres and doctors registered in the application;
  • Information on the availability of treatments;
  • Information on locations and opening times of screening and electrophoresis testing centres;
  • Creation of dialogue and exchange groups (social network);
  • Ability to view and publish all events related to sickle cell disease;
  • Possibility to subscribe to a voluntary blood donation to help a sickle cell patient.

Anemiapp is therefore intended for:

  • Sickle cell patients of age to use a phone or their parents or guardians and friends;
  • Those who wish to do the electrophoresis test;
  • Health centres and pharmacies approved to supply medicines;
  • People with anaemia requiring a blood transfusion;
  • Health care professionals;
  • All those interested in sickle cell disease.

 

Field report of the initiative

Fields of application:

Telemedicine (remote diagnosis and consultations) - Information, education and communication for behaviour change (IEC) - Patient monitoring and medical data

Target audience

  • Healthcare professionals and structures (hospitals, healthcare centres/clinics, health networks)
  • Entire population
  • Sick people
  • Pregnant women
  • Children - adolescents (ages 6-18)
  • Young children (0-5 years)
  • Patient family/entourage

Initiative objectives

  • Decreased mortality
  • Decreased morbidity
  • Reduced suffering
  • Improved treatment
  • Information on the availability of treatments

Key figures

302 Number of beneficiaries since launch

264 Number of users per Day

Materials used

  • Cellular (mobile) phone
  • Smartphone
  • Tablet
  • Computer

Technologies used

  • Mobile telecommunications (without data connection)
  • Internet
  • Geolocation
  • Mobile app (Android, iOS, Windows Phone, HTML5, etc.)

Offline use

Yes

Open Source

No

Open Data

No

Independent evaluation

Yes
evaluated independently

Partners

Ministère de la Santé (Programme National de Lutte contre la Drépanocytose)

Health: Healthcare professionals and structures

Rezo Drepano SS

Organizational: Communities, public authorities, NGOs, associations, foundations, etc.

ORANGE

Industrial: Startups, enterprises, etc.

Partners

Collaborators

startupBrics