At INC Research, we have a deep understanding of the challenges of conducting orphan disease research. In the past 10 years, we’ve helped clients to conduct nearly 100 such trials. We can assist you with site selection, identifying your unique patients and in taking care of logistics, data management and operational strategy. Relax, and let our knowledge and experience create real value for you. 

We understand the whole landscape in rare disease research

When there may be only one or two patients per country in your clinical trial, site selection becomes critical. “Expert” investigators may have only ever seen a handful of patients at most with this particular condition, and the site needs to be set up for the unique needs of the patient, and located somewhere it is possible for the patient(s) to travel to.

 

We develop individual strategies for each orphan disease trial, because we appreciate that no two studies in this category can ever be alike. We also bring together deep therapeutic experience, and extensive knowledge of registry and market access, and regulatory consulting. It’s what sets us apart.

 

Your investment into this tiny pool of patients is considerable, and you’ll find a partner in INC Research who appreciates all the challenges you are faced with before you see any returns.

 

We have a supporting program for training and clinical trials management and logistics. We provide staff support and study co-ordinators to help manage patients.

 

Selected sites consistently report that they feel part of a team, and they are never left alone to manage the very complex challenges that rare disease studies present. They work closely with INC and the client. We are partners in the truest sense of the word.

The INC Research Rare Disease Consortium

In order to facilitate a more streamlined process for site selection, patient localisation, and genetic testing, and to ensure we work with laboratories that support your trial, we have set up a Rare Disease Consortium, whose mission it is to help bring vital treatments to patients with rare diseases in a faster and better way. 

When the number of patients is small, we go even bigger on communication and sharing of information - more than in any other area of medical research. Through our Consortium, we foster collaborative relationships between investigative sites, treating physicians, patient advocacy groups, academic thought leaders, and Sponsors, with the aim of creating the best patient experience while obtaining the most robust clinical data.