Data make the invisible visible - Melinda Gates

Rationale and benefits:

In Africa, like in many other regions around the world, the availability, utilization, practices and outcomes of assisted reproductive technologies (ART) is monitored with the help of a data registry. There are many benefits of locally generated real-life scientific data derived from ART Registries:

Greater visibility of ART in the landscape of sexual and reproductive health and rights (SRHR) in African countries

Greater international visibility of ART in Africa in the global landscape of SRHR

A sound scientific foundation to further strengthen high-quality infertility care and access to this care

An evidence-base to inform clinical and laboratory practices

National and regional benchmarks against which individual ART centres can confidentially monitor their own data

A source of information for patients, patient counselling, and societal engagement without disclosing the anonymity of participating centres

Scientific data to inform national health institutions and other stakeholders; and through these health policy, training, and capacity building

A source for local and regional research, research collaborations and research capacity building

The ability to assess current status and monitor progress and trends over time

ART monitoring in Africa

At country level, ART monitoring and reporting was first established in Egypt (1989) and South Africa (2009). Multinational monitoring emerged in 2016 with the establishment of ANARA, the African Network and Registry for ART. To date, 73 centres from 18 countries have contributed their data to the African Registry (www.anara-africa.com/map) and the number is steadily growing. Registry findings are regularly released into the public domain through scientific communications.

 

AFFS and ANARA

are two Africa-wide reproductive networks focused on infertility and fertility care. The AFFS is the network or fertility societies. ANARA is the network of ART centres and, through the African Registry, the data voice of ART in Africa. AFFS and ANARA are independent but in mutual support of each other. ANARA makes the pooled African data freely available to the AFFS to use in support of the AFFS mandate. The AFFS has established a Data Task Group to strengthen data collection in Africa and harness the scientific power of data.

The three key principles of data monitoring by ANARA are

1. Strict confidentiality. Data from individual ART centres are kept strictly confidential and are never disclosed.

2. Bi-directional information flow from ART centres to the Registry and back to ART centres. Specifically, ANARA reports back at three levels:
a. To each participating ART centre strictly confidentially their own data
b. To each country (i.e. the collective of nationally participating ART centres) the pooled national data
c. To all ART centres in Africa the pooled regional

 

3. Protection of data ownership. each centre continues to own their own data; countries (the collective of nationally participating ART centres) own their national data; ANARA owns the regional (Africa) data.

The six key processes of data monitoring by ANARA are

1. Free and voluntary registry participation. ART centres are given free access to ANARA's state-of-the-art, cycle-based software.

2. Type of data. The Registry collects cycle-based, core data on the availability, utilization, practices, outcomes and safety of ART. Data are aligned with other regional ART registries. The capture of one cycle takes approximately 3 to 5min.

3. Two methods of data submission. Centres can submit data prospectively directly online or by uploading data captured in ANARA specific Excel data templates. The latter can also be used by centres using alternate data software for the transfer of data.

 

4. Participation in the ART World Report. ANARA submits the annual national and regional data to the International Committee for Monitoring ART (ICMART).

5. Acknowledgement. All participating centres are acknowledged by name in published Registry reports; are displayed by name on the ANARA website; and receive Certificates of Participation from both ANARA and ICMART.

6. Operational team and hub. ANARA is led by a small, constant operational team that facilitates trust and continuity. The Network and Registry hub is hosted by the University of Cape Town, South Africa. The African Registry is in South-South Collaboration with the Latin American Registry for ART.

For more information on ANARA please visit

Compiled by
S Dyer, Director ANARA
I Wada, Chair AFFS Data Task Group
Date: January 2021