Vitaccess

28/02/2026

Today on Rare Disease Day, we want to recognize the millions of people worldwide living with rare conditions.

At Vitaccess, we’re privileged to work alongside patients and advocacy groups representing multiple rare disease communities, building evidence to inform better treatment decisions and improve patient outcomes. From myasthenia gravis to sickle cell disease, cystic fibrosis to rare metabolic conditions, we've seen firsthand how powerful patient voices become when combined with rigorous scientific methodology and a long-term perspective.

Patients and caregivers aren't just data points, they're individuals navigating unpredictable symptoms, complex treatment journeys, and the daily reality of living with conditions that many healthcare systems struggle to fully understand.

To everyone in the rare disease community, patients, caregivers, clinicians, and advocates, thank you for your continued trust and collaboration. Your voices drive better research, which drives better care.

26/02/2026

Our CEO Larkin and Director of Patient-Centered Research, Llewellyn will be attending the Evidence, Pricing and Access Congress 2026 in Amsterdam, from 3-4 March, 2026.

If you are attending and would like to schedule a meeting with Mark or Sam to learn more about Vitaccess and our work in patient-centered, science-driven real-world evidence generation, please get in contact with our team via: info@vitaccess.com

24/02/2026

Patient recruitment for real-world studies is often described as a numbers problem, but in reality, it’s a trust problem.

So, what actually makes patients say yes to a study?

From our experience, it’s rarely a single factor. It’s about whether participation feels meaningful, respectful, and feasible alongside everyday life.

Patients are more likely to engage when they can see value for themselves, not just for future research. That can include access to their own study data, visibility of information drawn from their medical records, or simply understanding how their contribution fits into the bigger picture.

Ensuring patients feel valued and listened to is vital. Many participants are motivated by the opportunity to contribute to research, to share lived experience, and to help improve care for others with the same condition, particularly in rare diseases, where a sense of community is very strong.

It is also important to factor in patients’ everyday lives. By making it easy to take part from home, on any device, you reduce burden and remove additional barriers. Thoughtful compensation and regular acknowledgement of participants’ time also signal respect, not reward.

When studies are designed around patients, their time, their priorities, and their daily realities, recruitment becomes less about persuasion and more about partnership.

See our website for more evidence about how we focus on patients: https://bit.ly/4am3pDJ

19/02/2026

Excited to see our MGFA partnership making waves in the MG community!

Steve Bryson from Myasthenia Gravis News has covered our collaboration with the Myasthenia Gravis Foundation of America, Inc., highlighting how we're working together to address the critical gap between clinical trial data and real-world evidence to improve patient care for those living with MG.

While clinical trials can show whether a therapy works under controlled conditions, they often miss the long-term, day-to-day patient experiences that regulators, payers, and HTA bodies are looking for.

The piece captures exactly why this partnership matters: we're combining MGFA's deep connection with the MG community with our scientific expertise to build evidence that can improve outcomes for patients and caregivers living with MG.

Looking forward to our upcoming webinar with the MGFA on Friday 20 February on how the Vitaccess Real MG (VRMG) registry is strengthening the patient voice and advancing real-world evidence to support better care for people living with MG - including how patients and clinicians can get involved.

Read the full article here: https://hubs.ly/Q043MMc60

19/02/2026

One of the most common questions we hear in rare disease research is deceptively simple: “How many participants do we actually need for our study?”

In reality, the answer is rarely a neat number.

In rare diseases, sample size planning is often less about statistical power and more about feasibility, variability, and the decisions the evidence needs to support. Recruitment constraints, heterogeneous disease trajectories, and evolving endpoints all matter.

Formal hypothesis testing is not always the goal. Often, the key consideration is the feasibility of recruiting participants and the insights that the resulting participant data can reasonably offer.

In more traditional study designs, the starting point is different:

· What is the primary outcome?
· Which analysis is required?
· What constitutes a clinically meaningful difference?

Only then can assumptions around variability and precision inform a sample size that is fit for purpose.

Across both contexts, the principle is the same, and good planning isn’t about bigger datasets, it’s about smarter study design.

When evidence is designed around the research question, participant burden, and real-world feasibility, even smaller studies can deliver robust, decision-grade insights. This is especially true in rare diseases, where thoughtful methodology and patient-centred design matter more than numbers alone.

Visit our website to find out more about our work in rare disease: https://bit.ly/4aDUYme

18/02/2026

When assessing health-related quality of life ( ) in pediatric oncology, whose voice should matter most?

Our recent Journal Club reviewed a paper by Meryk et al. (2023), which explored discrepancies between mother, father, and child reports during cancer treatment.

The discussion revealed fascinating insights: children consistently reported fewer impairments than parents, especially one month after therapy. Fathers tended to overestimate symptom burden, particularly for non-observable domains, while mothers' reports aligned more closely with children's self-reports, suggesting they may be more reliable proxies when needed.

This raises an important question for our field. How should clinical research and HTA frameworks balance patient-reported outcomes vs proxy reports in pediatric settings?

At Vitaccess, these complex discussions help us stay at the forefront of methodological thinking in real-world evidence generation, ensuring our research captures the voices that matter most.

Read the full publication here: https://bit.ly/4rXkPN5

12/02/2026

We're pleased to announce our partnership with the Myasthenia Gravis Foundation of America, Inc., as the official collaborator for the U.S. cohort of our Vitaccess Real MG (VRMG) clinical registry.

Here's why this matters: MG research has a gap. Clinical trials show what can work, but regulators and payers increasingly want to see the full patient journey and the real impact on daily life.

This partnership changes that. We're bringing together MGFA's incredible community with our patient-centred evidence platform. Plus, we're combining 10 years of MGFA's legacy data into one comprehensive MG data resource. MGFA will join our Scientific Advisory Board, ensuring patient and clinician voices guide every research decision.

This is how patient advocacy and rigorous science work together to generate evidence that actually improves lives.

Read the full announcement here: https://bit.ly/4r7NajD

03/02/2026

Myasthenia Gravis is a chronic, autoimmune disorder with no known cure. It causes fluctuating muscle weakness, droopy eyelids, double vision, and difficulty speaking or swallowing. But for many patients, symptoms can progress to affect arms, legs, and even breathing.

What makes MG particularly challenging is its unpredictability. Symptoms can vary dramatically from day to day, hour to hour. A patient might feel strong in the morning but struggle to lift their arms by afternoon. But the impact goes far beyond physical symptoms. The uncertainty affects work, relationships, and mental health.

At Vitaccess, we've had the privilege of working with MG patients worldwide through our Vitaccess Real MG (VRMG) registry. Through combined patient and HCP-reported data, we've learned just how complex and individual this condition is, and why understanding the patient experience is crucial for developing better treatments and support systems.

Despite these challenges, there's reason for hope. Treatment options have expanded significantly, and with proper management, many people with MG live full, active lives.

Behind every rare disease statistic is a person whose story deserves to be heard and understood.

26/01/2026

We’re delighted to welcome Ash Clift, to the Vitaccess team, as our Director of Analytics.

With more than a decade of experience spanning real-world evidence, predictive analytics, clinical research, and population health, Ash has driven high-impact evidence generation across both academia and industry. He has played a key role in developing population-level datasets across multiple disease areas and contributed to nationally significant initiatives, including the QCOVID algorithm that informed vaccination prioritisation during the pandemic.

His background combines clinical epidemiology and data science, with a strong track record of translating complex, large-scale data into insights that inform healthcare decisions. Ash completed his MBBS at Oxford and later received his DPhil in Cancer Science from Imperial.

Ash’s expertise will play a key role in strengthening how we deliver robust, decision-ready evidence – welcome to the team Ash!

13/01/2026

At Vitaccess, we are patient-centric and tech-forward. What does this mean? It means leveraging cutting-edge technology and patient-focused methodologies to deliver unparalleled insights.

💡 Learn more about our innovative approach at https://bit.ly/4qSYyzq

Real Data. Real World Impact. Vitaccess helps pharmaceutical and biotech companies generate high-quality real-world evidence through patient-centered, tech-enabled research. Explore Case Studies Discover Our Solutions Expertise that elevates real-world insights Discover Our Solutions Observational s...

24/12/2025

Wishing all our friends, clients, patient participants, and collaborators Happy Holidays and a Happy New Year!

Time to turn off the laptops, turn up the Wham, and pour a glass of mulled wine!

We hope you all have a very happy and restful break, and we look forward to working with you all again in 2026.

09/12/2025

Real-world evidence matters.

At the 19th European Headache Congress last week in Lisbon, our collaborators presented the design of the CORRELATE-UK study (NCT06898047) - a real-world study exploring the effectiveness of rimegepant for the acute treatment of migraine in a UK population.

We’re proud to play a role in advancing migraine research.

See the poster here: https://bit.ly/4rvxZRW