Patient advocacy groups

Cisiv is well-suited to answer the needs of patient advocacy groups and scientific consortium looking to build patient registries and patient centred research.

There are numerous benefits to engaging with the patient community and advocacy groups to gain perspective on the feasibility of research objectives. Utilisation of the patient community in real world evidence allows for a more well-rounded approach. 

Patient advocacy groups commonly provide the understanding, support and medical information needed to make informed decisions about an individual’s health and treatment options. They are organisations that are set up to represent and support families and patients living with a specific condition. 

Cisiv understands the importance of working with patient groups as part of the study design process. We understand that having patient input can be impactful in ensuring patient and physician engagement in studies. 

We are committed to being a true partner through the entire lifetime of the project. When working with patient advocacy groups, we understand the requirements around patient data protection and privacy. 

So far, Cisiv has contributed to medical research in the following rare disease areas but not limited to: 

  • Primary Hyperoxaluria
  • Progressive familial intrahepatic cholestasis
  • Immune Thrombocytopenia
  • Advanced or metastatic neuroendocrine tumours
  • Dravet syndrome and Lennox-Gastaut syndrome
  • Thymidine Kinase 2 Deficiency – Primary mitochondrial myopathies
  • Cushing Syndrome – endocrine rare disease
  • Ataxia Telangiectasia (AT) – also know as Louis-Bar syndrome
  • Pompe Disease
  • Bardet-Biedl Syndrome
  • Hereditary Angioedema Type I and II
  • Metachromatic leukodystrophy (MLD)
  • Niemann-Pick diease

Why partner with us?

Cisiv’s platform, Baseline Plus, has been designed for the real world environment with incredible ease of use. We have continued to adapt to the changing market for 15 years as the technology eco-system has evolved. Baseline Plus is designed with multilingual support, a clean and simple data entry process that allows for ease of data entry by patients, carers and physicians.

Baseline Plus, can be configured to meet the needs of many different therapeutic areas. Cisiv has supported diverse studies ranging from oncology, dermatology, neurology, pain, rare diseases, MSK, rheumatology, infectious diseases, immune-system disease, vaccines, cardiovascular and others.

To read our case studies click here.

To learn more about how we partner contact us here.


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