Our Projects

Each project focuses on a specific health area, making our platform tangible and impactful. Projects let us test and refine our tools, engage the right stakeholders, and deliver measurable results.

01 · Active Pilot

Active Pilot

Women's health

We start with the menstrual cycle, a vital sign medicine has overlooked for decades. Our pilot focuses on endometriosis, PCOS, infertility, and hormonal health: endometriosis alone affects roughly 1 in 10 women of reproductive age, and PCOS as many as 1 in 8,¹ yet both remain severely underdiagnosed and understudied.

¹ (WHO, 2023) Source ↗ WHO Endometriosis Fact Sheet (~10% of reproductive-age women); (ACOG, 2023) Source ↗ American College of Obstetricians and Gynecologists, PCOS FAQ (up to ~13 in 100).

Participants securely store their health data on HDS and choose whether to contribute it to research, with full, granular, revocable consent at every step. No data leaves without explicit permission.

Sign up for the Women's Health Pilot →

02 · Upcoming

Coming Next

Upcoming

Reproductive longevity

Ovarian aging is one of biology’s most important clocks, and one of the least understood. The science is accelerating, but researchers lack the longitudinal, consented data they need to make progress.

HDS will support the first privacy-first cohort tracking fertility biomarkers over time: AMH levels, cycle regularity, hormonal patterns, and lifestyle markers. No single clinic or app can build this dataset alone. With HDS, participants can, on their own terms.

Join the Interest List →
Upcoming

Autism

Most autism research is built on data from children. Adults — especially women and girls diagnosed late or never — are almost entirely absent.¹ The result: care protocols that don’t fit, and researchers designing studies blind.

¹ (Rubenstein & Furnier, 2021) DOI 10.1089/aut.2020.0031 Autism in Adulthood; (Pellicano et al., 2014) DOI 10.1177/1362361314529627 Autism.

HDS will support the first longitudinal dataset tracking autistic adults’ health journeys across their lifespan: from self-reported daily patterns to clinical outcomes, on participants’ own terms.

Join the Waitlist →
Upcoming

Rare diseases

The average rare disease patient waits 4.7 years for a diagnosis, and 22% consult 8 or more specialists along the way.¹ At every consultation, their history is reconstructed from memory and scattered paperwork.

¹ (Faye et al., 2024) DOI 10.1038/s41431-024-01604-z European Journal of Human Genetics, Rare Barometer survey of 6,507 respondents in 41 European countries.

Rare disease patients are overwhelmingly willing to share their data: 97% would do so to improve diagnosis or research on their disease. But 80% also want full or near-full control over how it’s shared², control that most existing tools don’t give them.

HDS gives patients a single, secure, shareable record, so the next specialist sees the full picture from day one. For researchers, it means the first truly longitudinal, multi-site cohort built with patient consent at every step.

² (Courbier et al., 2019) DOI 10.1186/s13023-019-1123-4 Orphanet Journal of Rare Diseases, EURORDIS Rare Barometer survey on data sharing and protection.

Join the Interest List →

For institutions, foundations & researchers

Co-Create a Project With Us

Health Data Safe is designed as an open, collaborative platform. Beyond our core projects, we invite partners — patient groups, foundations, hospitals, researchers, and companies — to co-create new initiatives with us.

By developing a project together, you can:

  • Focus on the health area that matters most to your mission
  • Engage your patients, communities, or beneficiaries in shaping the research agenda
  • Benefit from HDS's secure, ethical, consent-based infrastructure
Explore the Partnership page →

Patient & Partner Summit

To launch and strengthen these collaborations, HDS will convene a Patient & Partner Summit, bringing together patients, healthcare professionals, researchers, funders, and policymakers. This congress will be a space to:

  • Share experiences and needs from diverse communities
  • Identify new joint projects to accelerate research and care
  • Build a culture of trust, transparency, and shared governance in health data
Get involved in the Summit →