Research
Why you can trust it.
Every step has been carried out with the people concerned, published and evaluated, through work conducted since 2015 between Geneva and the Caribbean.
First work, with patients: a study of the challenges and opportunities of digital health tools in sickle cell disease, and the co-design of a mobile app and a smartwatch app (Karolinska Institutet, Norwegian Centre for E-health Research, University of Tromsø, HUG and University of Geneva).
DREPACOACH, the first support app designed with patients (HUG, University of Geneva).
Publication of Trévor's design and usefulness study in Frontiers in Digital Health.
“Quality of care” project at HUG, with emergency card, educational content and a link to HUG@Home.
Trévor renewed, with an evaluation at HUG through the TREVOR-PILOTE study, awaiting authorisation. Adapted physical activity joins Trévor over this period.
The LifeRover study aims to follow families over several years to understand the factors of a better life with sickle cell disease, at school, at work and at home. In Trévor, My life with the illness is its first step.
Contribute, starting today
Open Trévor: using it means joining the test programme (beta) and unlocking every feature. The TREVOR-PILOTE clinical study (eight weeks, at HUG) will open once the cantonal research ethics committee has authorised it; its waiting list is already open.
A tool supporting integrated and comprehensive care, and research.
Coach Drépano is a tool supporting integrated and comprehensive care and research in sickle cell disease. It brings together the Trévor chatbot, the mobile app, the watch and the dashboard. The disease is complex and varies from person to person and over time. A single view gathers daily measurements, treatments, environment and lived experience, which simplifies the lives of the people concerned and gives their care team a fuller picture.
Seven domains of influence, seven features
Royal and colleagues describe seven domains of influence on sickle cell disease in the INGAM framework. The mapping below is ours. It shows where each domain has a place in the product and does not come from the article.
| Domain (Royal et al.) | Coach Drépano feature |
|---|---|
| Biological | Oxygen saturation (SpO2), heart rate variability (HRV) and hemolysis estimate. |
| Psychological | Evening check-in and the “Stress and energy” coaching topic. |
| Clinical | Transfusion tracking, emergency card and clinician dashboard. |
| Behavioural | Treatments and missed doses, “Sleep, activity and joints” coaching. |
| Sociocultural | Peer community and an app translated into 18 languages. |
| Structural | Therapeutic education pathway and a dashboard linking the person to the care team. |
| Environmental | Weather, pressure, humidity, pollution and noise signals in the personalised crisis risk. |
The same authors also propose a preliminary model of pain in four groups of factors. Their preliminary pilot study, conducted in Cameroon, Jamaica and the United States, associated in Jamaica a younger age, lower temperature, higher rainfall, lower environmental zinc and greater poverty with a higher probability of a pain episode. The associations did not differ by genotype, and the authors consider this pilot preliminary.
Idris, Botchwey and Hyacinth argue in a narrative review that sickle cell disease can be read as an accelerated aging syndrome, in which chronological age can mislead compared with biological age (brain, kidney, heart, immune and musculoskeletal damage). The authors present this as a reasoned hypothesis.
Preventing complications, protecting tissue
In Trévor, the “Prevention and longevity” menu brings together the per-organ examination plan (eyes, kidneys, brain, heart and lungs), complication follow-up and a “Repair and protect my tissues” pathway. It shows the state of each examination, plots the size of a leg wound noted by the person, flags a wound that has not shrunk after four weeks and adds these points to the consultation summary. The four-week mark is a simple choice, to be validated with clinicians.
Established: stem cell transplantation from a matched donor and, in Switzerland, the gene therapy Casgevy (Swissmedic, time-limited authorisation of 6 September 2024, from age 12). Under study: cell treatments and growth factors for leg ulcers and osteonecrosis, where the evidence remains of very low quality for ulcers (Cochrane review 2021, six trials). Epigenetic aging clocks belong to research (Lê et al., Blood Advances 2024) and Trévor calculates no biological age. In 2015 the federal authorities warned against unauthorised cell products offered in clinics.
On the Swiss side, Trévor is hosted in Geneva. The paediatric oncology and haematology unit of the HUG held a day devoted to comprehensive sickle cell care (20 June 2026). We found no published national reference centre and do not claim to represent one.
Serving research
Royal and colleagues recommend harmonising consent and data-sharing policies, standardising vocabulary and phenotyping (SCD Ontology), conducting large integrative studies and involving data-science experts. Coach Drépano offers an explicit research consent, revocable at any time, and a pseudonymised data export. We are progressively aligning our research variables with the open INHERENT case report form, which serves as the reference. This work is under way and coverage is still partial.
We assessed our research data against the 15 FAIR principles (findable, accessible, interoperable, reusable). This self-assessment of 9 October 2026 gives 2 principles met, 10 partly met and 3 not met, mainly for lack of a persistent identifier (DOI), which we will request from an open repository. A public descriptor lists the 25 variables of the export, 6 of them coded in LOINC, with their access conditions. The data themselves are never public: access on request, with consent, pseudonymisation and an aggregation threshold. A survey of 44 centres in 22 countries (Tamana et al., 2026) found that half document basic metadata, 20% use recognised ontologies and HL7 FHIR appears only in isolated cases: our work addresses these same points. Dataset descriptor
For epidemiologists
Trévor brings together varied data: 49 questionnaires (731 questions), 17 watch or ring measures, 21 organ biomarkers in LifeRover, and the weather and air quality of the place where the person lives. Each measure carries its date, so change can be followed over time, day after day. The person's location, when shared, is used to show the alerts of their country: surveillance by the FOPH, the Sentinelles network and the ECDC, weather and air. The country follows the person when they travel. The research export contains no position, and its dates are shifted. A dynamic map aggregated by region, with a minimum threshold of 10 people, and a history of places of residence to study migration are built. Their opening awaits the opinion of the ethics committee.
Coach Drépano is a support tool. It does not replace the care team, and taking part in research rests on a consent that each person can withdraw.
References
- Royal CDM, Babyak M, Shah N, Srivatsa S, Stewart KA, Tanabe P, Wonkam A, Asnani M. Sickle cell disease is a global prototype for integrative research and healthcare. Advanced Genetics 2021;2(1):e10037. doi:10.1002/ggn2.10037
- Idris IM, Botchwey EA, Hyacinth HI. Sickle cell disease as an accelerated aging syndrome. Exp Biol Med 2022;247(4):368-374. doi:10.1177/15353702211068522
- Lê BM et al. Characterizing epigenetic aging in an adult sickle cell disease cohort. Blood Adv 2024;8(1):47-55. doi:10.1182/bloodadvances.2023011188
- Martí-Carvajal AJ, Knight-Madden JM, Martinez-Zapata MJ. Interventions for treating leg ulcers in people with sickle cell disease. Cochrane Database Syst Rev 2021;CD008394. Cochrane
- Swissmedic. Casgevy (exagamglogene autotemcel), autorisation du 6.9.2024. swissmedic.ch
- Conseil fédéral. Confédération et cantons contre les offres de thérapie par cellules fraîches illégales, 26.3.2015. admin.ch
- Tamana S, Yiangou K, Orphanou K, Chatzimatthaiou S, Kountouris P, Cremonesi F, et al. FAIR data gaps and collaboration willingness among hemoglobinopathy research centers. Scientific Data 2026;13. doi:10.1038/s41597-026-06950-9
- International Hemoglobinopathy Research Network (INHERENT). Case report form, version 2, juillet 2026 (licence CC BY 4.0). doi:10.5281/zenodo.21260336