The Challenge of Rare Disease Research
We’ve always been a medical marketing agency that ‘loves a challenge’. It’s this tenacious streak in our makeup that has shaped the work we do, and the clients we attract. Over the past decade LDA Research has consistently risen to the challenge of finding and enlisting doctors and specialist nurses who treat rare and low incidence diseases. Think of us as the Sherlock Holmes branch of the medical market research sector.
Why are Rare Disease Clinicians Hard to Find?
Clinicians working with ‘rare’ diseases are fewer in number, and their work is likely to fly under the radar. For this reason alone, locating them requires detailed and careful research. Many fieldwork companies prefer to work with clinicians already available to them via their panels. These typically favour high incidence conditions such as diabetes, or asthma, for example. LDA Research is different; we commit to putting in the time and legwork to find rare disease specialists.
Researching Hard-to-Access Healthcare Professionals
We will often begin by approaching charities to help us to locate clinicians working with specific diseases, alongside secondary research which will enable us to identify specialist treatment centres and key opinion leaders. This painstaking work eventually allows us to review the output of specialists working in a particular field, in order to find potential participants who fit our profile requirements. As we get to know and work with doctors and specialist nurses for a disease type, they may suggest other people we might want to contact.
Our Rare and Low Incidence Disease Research
Medical market research carried out in the past 12 months includes:
- Cystic Fybrosis – researching the impact of COVID-19 on its treatment (UK).
- Cystinosis – message testing (France, Germany, Italy, Spain and the UK).
- Lennox-Gastaut Syndrome (LGS) – Research into the future treatment landscape for this disease in order to target product profile (Canada, China, Germany, France, Italy, UK, Spain).
- Myelofibrosis – Detail aid testing (Republic of Ireland, UK).
- Narcolepsy – Patient support programme (UK).
- Primary Hyperoxaluria Type 1 (PH1) – Researching the treatment pathway for this disease and the range of patient support required (France, Germany, UK).
- Pulmonary Arterial Hypertension (PAH) – novel therapeutic options (UK).
- Surgical Robots – testing a new product concept (US, UK and Germany).
- Von Willebrand Disease (VWD) – message testing with VWD treating physicians (UK, Germany, France, Italy and Spain).
The Impact of Rare Disease Research
The numbers of specialists working on rare disease types may be small, but the cumulative population is significant in terms of research. Without the insights that these healthcare professionals are able to provide, the perspective they represent would be unavailable to pharma providers.
Working with rare disease specialists allows us to fill in critical knowledge gaps for our clients. We may be assessing doctors’ openness to new kinds of treatment, or discovering new kinds of questions that we should be asking about a particular disease. The work we do ensures that insights that might otherwise be missed, are accessed and used to support patients.
