Fondation Pierre Fabre

To improve the quality of life of people with sickle cell disease

Main beneficiary countries:
Benin - Congo - Kinshasa - Cameroon - Gabon - Mali - Côte d’Ivoire - Senegal - Niger - Burkina Faso - France

About the sponsor

DREPACARE

DREPACARE is an association that fights to improve the quality of life of people with sickle cell disease. Its objectives are to inform, prevent, support and help people suffering from sickle cell disease through the creation of e-health tools, discussion groups and videos of information and testimonies.

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

Country of origin: France

The organisation has:

3
Full-Time Equivalents
0
Employee
17
Volunteers
7
Service providers

Initiative overview

Healthcare themes targeted

  • Chronic diseases

Stage of development:

  • Pilot project/testing/trials

Area where initiative is utilised

  • International (in several countries)

Initiative start date

  • 01/01/2017

Financing

Financing method

  • Public (grant/subsidies, call for proposals/call for tender, etc.)
  • Private (private investors, crowdfunding, philanthropy, etc.)
  • NGO
  • Contest, prevention course and Micro donations from shops

Economic model(s)

  • Subsidies
  • Donations
  • Contest

About the initiative

Sickle cell disease is the most common genetic disease in the world. This genetic mutation that deforms and stiffens red blood cells is symptomised by very painful vaso-occlusive attacks, induced by the obstruction of blood vessels by half-moon-shaped blood cells, chronic anaemia, increased susceptibility to infections and other acute or chronic complications. Every year, 300,000 sickle cell children are born in Africa. In the absence of screening and adequate care, more than half of these children will die before the age of five. Yet, this disease remains taboo, unknown, and with little or no treatment. This results in the stigmatisation of sickle cell disease, a lack of knowledge surrounding the disease and the absence of good practices and attitudes to adopt for better prevention of sickle cells crisis and complications, as well as a lack of empowerment among sickle cell patients.

Despite a slight increase in the average age of death of those with sickle cell disease in some countries, such as France, the life expectancy of sickle cell sufferers remains very low in several others, particularly in Africa. The occurrence of painful seizures and complications requires frequent hospital admissions and adequate management. However, this care is not always possible due to a lack of medical facilities, trained health personnel and innovative patient monitoring tools.

In Africa, access to smartphones is booming. In 2011, for every one billion inhabitants, there were 641 million SIM cards. After China, it is the market that is experiencing the highest growth rate, with nearly + 30% per year (source: Inaglobal). With these advances, the mobile phone makes it possible to provide e-health services.

Although it is a prototype, Drepacare is the first mobile application for personalised, preventive and informative monitoring for sickle cell patients and health professionals. It is free of charge and has been created with the help of users. Drepacare has worked with approximately 100 sickle cell patients, as well as collaborating with 23 health professionals - including Marina Cavazzana, a pioneer in gene therapy for sickle cell disease and scientific mentor of Drepacare - and more than 17 associations around the world. We have set up seven teams in Africa: in Benin, Cameroon, Gabon, the Democratic Republic of Congo, Mali, Senegal and Niger. It is important for us to have teams in countries with a high prevalence of sickle cell disease in order to build and test the usefulness of this solution by its users, in the field.

One of Drepacare's main values is the work and collaboration with sickle cell patients and the health professionals who care for them. Collaboration with health professionals is essential. Through the "pain", "hospital admissions" and "medication reminder" features, Drepacare offers healthcare professionals information that they did not have until now, via the patients.

The Drepacare application includes features that are useful on a daily basis to support sickle cell patients wherever they are.

The application has three main feature groups :

  • Personalised follow-up :
    • "Pain" : the patients select the location of their pain and the pain threshold. The recorded data generate histograms that the patient can then download and make available to their specialist doctor, either by email or during an appointment.
    • "Hospital admissions": a history of all hospital admissions recorded by the patient. This also generates a histogram that can be downloaded and sent to a doctor via email.
    • "Alarm": In an emergency, the user can automatically send alert messages to numbers they have previously registered and thus receive help in time.
  • Prevention :
    • "Hydration": very good hydration fluidises the blood and limits vaso-occlusive attacks in sickle cell patients. This feature helps the patient to achieve his or her daily goals. In order to do this, they choose the quantity of water they should drink and set reminder times so that they are notified according to these choices.
    • "Medication": this allows the patient to keep a record of all their medication and their associated dosages. The patient will then receive appropriate notifications, the goal of which is to increase patient compliance.
    • "Genotype": this feature allows partners, couples, parents to find out their risk of transmitting the disease to their children.
  • Information :
    • "Health and Nutrition": informative and preventive articles that address specific topics on nutrition and sickle cell disease.
Field report of the initiative

Fields of application:

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)
  • Sick people
  • Children - adolescents (ages 6-18)
  • Patient family/entourage

Initiative objectives

  • Decreased mortality
  • Improved treatment
  • The reduction of painful seizures and hospital admissions

Key figures

2700 Number of beneficiaries since launch

34 Number of users per Week

Materials used

  • Cellular (mobile) phone
  • Smartphone

Technologies used

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

Offline use

Yes

Open Source

No

Open Data

No

Independent evaluation

Yes
auto-evaluated or evaluated by a related organization

Partners

La filière des maladies génétiques rares du globule rouge (MCGRE )

Health: Healthcare professionals and structures

MAKE SENS

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

SAP

Industrial: Startups, enterprises, etc.

DORYS

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

Partners

Collaborators

startupBrics