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History and background SHCS
initial steps
The collaboration between different centres caring for persons with HIV (PWH) in Switzerland 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 suspected AIDS, and of persons at risk for HIV transmission 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 emerging HIV epidemic. During these first years, several clinics began to collect epidemiological data on PWH 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). These data were later integrated in the SHCS database.
FOPH Director Beat Roos and Vice-Director Bertino Somaini continued the support of the university clinics and laboratories 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 mandated 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 this task. 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. Since 2021, the SHCS is recognized by the Federal Office of Public Health (FOPH) and by the State Secretariat for Education, Research and Innovation (SERI) as cohort of high national importance, and the SNSF supports the SHCS in the frame of the data infrastructure and services (DIS) program.
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
- Program A for HIV positive people, lead Ruedi Lüthy, and a
- Program B for people at risk, under the lead of Felix Gutzwiller.
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.
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 promted 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 numerous new innovative 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 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:
- the scientific board (SB), which consists of active scientific investigators with a large variety of multidisciplinary and interprofessional expertise, and
- the clinical and laboratory committee (CLC), which consists of members of the different centres and laboratories to coordinate data and sample collection for the decentralized biobank. Over the years, the SHCS created an invaluable biobank. The SHCS maintains a large biobank with more than 1.9 million plasma and viable cell samples, stored in eight different biobanks in Switzerland. This biobank is one of the main strength of the SHCS and worldwide one of the largest repositories to enable translational HIV research.
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, and is essential for studying drug-drug interactions and comorbidities. This field in HIV research has gained importance in recent years given the dramatic increase in life expectancy in PWH and increasing health issues associated with ageing.
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 was led by the new head of the data center Katharina Kusejko improving and simplifying data entry 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 overarching aim of MoCHiV is to follow pregnant women with HIV and their children in a systematic manner, to provide optimal care to mothers and children, and to stop mother to child transmissions.
Huldrych Günthard, president SHCS since 2012, Andri Rauch president since 2025
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. After more than a decade as the leader of the SHCS, Huldrych Günthard handed over the presidency to Andri Rauch, University Hospital Bern.
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. With the change of the SHCS presidency from Huldrych Günthard to Andri Rauch in 2025, the coordination centre moved to the University Hospital Bern. Barbara Leib was appointed as the new head of the SHCS coordination center at the University Hospital Bern.
data centre back in Zurich
After the retirement of Martin Rickenbach in 2015 and after the resignation of Franziska Schöni-Affolter, who led the data centre until 2016, 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. Alexandra Scherrer with the help of civilian servants and help of the IT of the University of Zurich set up the first SHCS web-application using the open source Python-based Django framework.
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 national and international research projects, maintaining and improving the SHCS web-application for electronic data entry using the Python-based Django framework. Since 2021, the SHCS hosts its own REDCap system where data collection beyond the regular SHCS data entry is performed. In particular, since 2022, MoCHiV data (see below) is collected electronically via REDCap. Furthermore, the data centre maintains New Application Programming Interfaces (API) for inter-cohort nested randomized controlled trials, and provides interactive dashboards on available data, benchmarking, and recruitment dynamics.
Patient and Public Involvement (PPI)
Since many years, persons living with HIV actively participate in SHCS research as members of the scientific board. For each SHCS nested project funding proposal, a description of how PPI is applied in the proposed project is required. This ensures that SHCS research considers the most urgent needs of persons with HIV, establishes a close link between the community 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 in 2024, the group published a seminal paper on PPI use in HIV research an established a PPI map to help researchers implementing PPI in their own HIV research project (HIV PPI map).
The SHCS innovation hub
At the SHCS retreat in Bern on 17th November 2021, it was decided to form the “SHCS Young Researcher’s group”. In 2025 the group was renamed as “SHCS innovation hub”. This new group of researchers with diverse expertise and scientific backgrounds to promote new multidisciplinary collaborations, and to encourage innovative research by providing a supportive platform for developing, exchanging and working on new HIV research ideas. The SHCS Innovation Hub fosters training and expertise exchanges, particularly for early career researchers. Furthermore, regular scientific exchanges with external experts invited for a talk bring fresh and up-to-date perspectives to the SHCS Innovation Hub.
acknowledgments and outlook
The overarching aim of the SHCS is to improve health of persons with HIV through clinical, epidemiological and basic science studies, and to strengthen collaborative and transdisciplinary research, education and outreach. Over more than 37 years, SHCS research was presented in >1500 publications with >95’000 citations and was the basis for numerous national and international guidelines for the treatment of persons with HIV. Furthermore, the SHCS had also a considerable impact of HIV research in clinical, translational, epidemiological and basic science. We are very grateful for the continuous funding of the SHCS by the Swiss National Science Foundation. Furthermore, the FOPH also support the SHCS, in line with the national program for HIV and hepatitis elimination (NAPS), as the SHCS is an invaluable resource for improving our understanding of HIV transmissions and for optimizing public health measures towards HIV elimination. Further funding comes from donations including the SHCS research foundation, several companies as well as from international collaborations.
The remarkable achievements the SHCS are the result of a unique interprofessional and interdisciplinary collaboration over several decades. But first and foremost, the success of the SHCS relies on the continuous engagement of all participants who contributed over so many years to SHCS research, education and outreach. The coordinated efforts of participants, clinicians, scientists, data managers, statisticians, administrative and laboratory personnel will ensure the continuous success of the SHCS for many years to come.