History and background SHCS

initial steps
The collaboration between the different centres began in 1984 when Ruedi Lüthy and Markus Vogt from the University Hospital Zurich organized the HTLV-III (now HIV-1) testing of Swiss patients with a suspected GRID-Syndrome (Gay-Related-Immunodeficiency Syndrome, now AIDS) and of persons at risk by collecting and shipping serum specimens to the laboratory of Robert Gallo at the National Cancer Institute in the US.

There, a Swiss Postdoc named Jörg Schüpbach took care of the analyses. After his return to Switzerland, Jörg Schüpbach became the Head of the Swiss Reference Laboratory for HIV (later the Swiss National Centre for Retroviruses).

In 1985, the first commercial HIV tests became available and the laboratories and clinics from the 5 University Hospitals were mandated and paid by the Federal Office of Public Health (FOPH) to react to the upcoming epidemic. During these first years, several clinics began to collect epidemiological data on patients with HIV and standardized their data collection.

first antiretroviral drug and data coordination
In 1987, the first antiretroviral drug AZT (Azidothymidine, Retrovir®) became available and the Federal Office for Social Insurance decided to limit the prescription of AZT to the network of the 5 University clinics that had just began to coordinate their data collection. These clinics documented the long-term experience with this new drug in the so-called AZT-PMS (Azidothymidine Post-Marketing Surveillance) and these data were later integrated in the database of the SHCS.

FOPH Director Beat Roos and Vice-Director Bertino Somaini continued the support of these partners based on the Federal Law on Transmissible Diseases with 10 individual contracts for the 5 laboratories and 5 clinics.

founding of the SHCS
In 1988, the FOPH took the farsighted decision to combine these 10 contracts into one and have the 10 partners to decide on the governance of the project and distribution of funds. Mr. Lorenzetti from the FOPH was then in charge to establish this new contract and to support the SHCS in building a coordination and data centre in Zurich which was led by Bruno Ledergerber from 1988 until 1995.

from the FOPH/KKAF to the SNSF
Approximately in 1987, the Federal Council established the KKAF (Kommission zur Kontrolle der AIDS-Forschung in der Schweiz) which took care of reviewing and funding the different projects of AIDS research until 2000, when the Swiss National Science Foundation (SNSF) took over. The reason for the transfer from the FOPH/KKAF to the SNSF was that the FOPH thought that due to the very high scientific activity of the SHCS it would make sense to attach the SHCS to the major Swiss research funding organisation.

Since 2006, the major part of funding comes from the competitive program for longitudinal studies that was started by the SNSF also based on the success of the SHCS. It became evident that studying chronic diseases in the form of long-term observational studies has a major impact on gaining knowledge and improving care for such diseases.

Ruedi Lüthy, president SHCS from 1988 to 1995
The president of the SHCS during these initial years was Ruedi Lüthy from Zurich, and the SHCS had a

The program B was abandoned during the reorganization of 1995, which was decided during a 2-day retreat organized by Mme Roubaty from the FOPH with the help of a professional moderator. The trigger for the reorganization was the renunciation of Ruedi Lüthy as president of the SHCS.

Patrick Francioli, president SHCS from 1995 to 2012
Patrick Francioli from Lausanne was elected as new president and the SHCS gave itself a new governance structure with emphasis on small nested research projects to stimulate publication-output which was rather small until then.

A considerable amount of the infrastructure budget (initially 50%) was now dedicated to small nested research projects. This new strategy forced the clinics and laboratories to come up with innovative research ideas and to publish the results. This change in governance was the major reason for the following scientific success of the SHCS. It triggered new research projects by many members of the SHCS and later on also from interdisciplinary collaborators outside from the SHCS. This new system fostered the development of young independent researchers and, as can be seen retrospectively, was a real ‘career development’ tool.

During this reorganization, the coordination and data centre was moved to Lausanne where the Centre Hospitalier Universitaire Vaudois (CHUV) offered very favourable conditions regarding infrastructure and IT-support. With Martin Rickenbach, an experienced and qualified physician became the new Head of the data centre.

Furthermore, two structures were created, which were imminently important for the success of the SHCS:

data handling
From 1988 until 1995, data collected on study forms were entered by local staff via modems into databases running on a sophisticated PICK® multiuser system. With the relocation of the data centre to Lausanne, it was decided to switch to paper-based data collection with centralized entry by trained data managers, mainly to improve completeness and quality of data.

In 2000, Walter Fierz and Rolf Gruetter proposed to develop SHCSWeb, a tool for electronic transfer of laboratory results, which was already available on computers of the clinics. Based on a common XML standard, each of the 7 clinics was assisted in creating the necessary extraction and communication interfaces. In 2001, SHCSWeb became operational and considerably reduced the workload of doctors, study nurses and data managers with copying and keying in lab-results.

In 2011, a further initiative towards more sophisticated data collection was started with the aim of collecting detailed medication information via a web-based system including brand names and dosage information. During 2012, specifications were elaborated and after evaluating several offers, the software company AdNovum was mandated with the WebMED project in October 2013, which became operational in January 2015. This system allows collecting all drugs in addition to antiretroviral drugs that are used to inhibit HIV-replication and is essential for studying drug-drug interactions and the comorbidities that have gained a lot of importance because due to success of antiretroviral treatment, life expectancy of HIV-1 infected individuals has dramatically been improved over the last two decades.

In 2017, the head of the data centre, Alexandra Scherrer, started the initiative towards full digitization of SHCS data entry. The team at the data centre implemented a web application for electronic data entry using the Python-based Django framework: https://www.djangoproject.com/. The system became operational in 2018 with rollout to all SHCS centres. The web application is built up in a modular way, which allowed expansion to further tools and features from 2019 onwards, e.g., tools for quality checks, nested studies, dashboards, benchmarking. In 2020, the WebMED application for entering medication was integrated in the SHCS Django Web App. Implementation of further features improving and simplifying data entry is ongoing, with continuous feedback from participating study nurses and physicians.

MoCHiV joins the SHCS
In 2004, the Swiss Mother and Child HIV Cohort Study (MoCHiV) was integrated into the SHCS. MoCHiV was a merger of the former Neonatal HIV Study (founded in 1986 by Christian Kind, St. Gallen) and the Swiss HIV and Pregnancy Study (founded in 1989 by Christoph Rudin, Basel). The aim of MoCHiV is to follow HIV-infected pregnant women, their offspring and HIV-infected children in a systematic manner and to provide optimal care to mothers and children and to specifically stop mother to child transmission.

Huldrych Günthard, president SHCS since 2012
After the retirement of Patrick Francioli as chair of the SHCS in 2012, Huldrych Günthard from the University Hospital of Zürich was elected as new president. Despite the distant locations, he decided not to relocate the data centre, mainly because of the favourable conditions and the well-functioning team led by Martin Rickenbach.

coordination centre
The coordination centre, however, was moved to Zurich in 2012. After Marie-Christine Francioli had led the coordination centre for 14 years in Lausanne, Danièle Perraudin took over the management in Zurich. The coordination centre runs and coordinates the administration and communication, manages the finances, the small nested projects, the website and the newsletters in four languages.

data centre back in Zurich
After the retirement of Martin Rickenbach in 2015, it became more difficult to lead the data centre from the outside and in February 2016, after resignation of Franziska Schöni-Affolter, who took over the lead of the data centre, Huldrych Günthard decided to move the data centre back to Zurich. The University of Zurich was very helpful in offering office space and IT resources and support for this challenging process.

In May 2016, Alexandra Scherrer was appointed as new head of the data centre and she led this process successfully. Since the beginning of 2017, the SHCS data centre is fully functional in Zurich. To update and adapt the new IT infrastructure in Zurich, various highly motivated civilian servants with strong IT background helped to make this transition phase a success.

In July 2020, Katharina Kusejko took over the position from Alexandra Scherrer and was appointed head of the data centre. The team at the data centre is responsible for the daily flow of SHCS data, data preparation for international and internal research projects, as well as maintaining and improving the SHCS Django Web App.

Patient and Public Involvement (PPI)
Since many years, patient representatives actively participate in SHCS research as members of the scientific board. This ensures that SHCS research considers the most urgent patient needs, establishes a close link between unmet needs of patient communities and the research priorities, and allows the constant adaptation of the research agenda to the changing priorities in HIV care. In 2021, a PPI group was formed and a standardized PPI process was introduced for SHCS research projects.

young researchers' group
At the SHCS retreat in Bern on 17th November 2021, it was decided to form a group of young researchers from different disciplines (clinics, labs, biostatistics, IT ...) with the longer-term aim of rejuvenating the cohort. The newly founded board with 10 members had its first meeting in April 2022. Their task is to network, develop new ideas and bring in research projects. They are represented in the scientific board.

Despite a unique success (in 2016, the SHCS published the 1000th scientific publication), the funding situation becomes more and more difficult and various funding sources are needed to keep the SHCS running. Since 2016, the Federal Office of Public Health (FOPH) supports the SHCS partially again because it was recognized that the SHCS plays a major role in

In 2021, the SNSF classifies the SHCS as a research-relevant data infrastructure (DIS), which is recognised by The State Secretariat for Education, Research and Innovation (SERI) and the FOPH as being of high national importance.

In the future, it is the goal to further strengthen the collaboration between the SHCS and the FOPH to bring down infection rates as much as possible and to improve patient care in general.