rare disease

The ‘voice of the patient’ needs to be heard in clinical trials: study

Raising Awareness for Rare: January

In our January edition of Raising Awareness for Rare, we explore cervical cancer, glaucoma, and thyroid diseases and their rare disease subgroups. January starts a month-long initiative to raise awareness and promote advocacy efforts for each of these diseases. Learn more about the rare subgroups of these historically common illnesses and how each condition impacts …

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Native American Heritage Month Improve access

Native American Heritage Month – Improving Access and Health Equity

During November, we embrace the cultural diversity of Native Americans while also recognizing the historical controversy and challenges they face. This total of almost 10 million people accounts for 2.9% of the entire United States population. Many Native communities, often residing on reservation lands, face steadily increasing obstacles such as limited resources, increased poverty, diminished access to healthcare services, and certain rare conditions.

cancer awareness no-shave november

No-Shave November: Cancer Awareness Month

Through the month of November, “No-Shave” participants let their hair grow as a way to start conversations and raise money for cancer research. Participants pledge to donate the cost of hair grooming for the month – from several dollars for razors to hundreds for a hair salon visit – to fund cancer research and increase cancer awareness.

rare disease trials patient support services

BioProcess International eBook: Patient Support for Rare Disease Trials

Download the eBook today! By providing direct support to participants from enrollment through the end of a clinical trial, logistics-management companies can help ease the financial, logistical, and psychological barriers to patient participation in rare disease trials. Such dedicated services can build trust between participants or caregivers and patient coordinators, improving the overall trial experience …

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Raising Awareness for Rare: October

Of the over 7,000 known rare diseases, only 5% currently have any form of treatment. With such staggering statistics, the need for increased awareness, education, and treatment options is imperative. This month we’ll be taking a deeper look at four rare diseases: Dysautonomia, Gaucher Disease, Niemann-Pick Disease, and Rett Syndrome.

decentralized clinical trial hybrid clinical trial

COVID-19 and the Changing Landscape of Clinical Trials

 Featured in Applied Clinical Trials: Decentralized trials are the way of the future—yet it would be ill-advised to think of them as a one-size-fits-all solution. While the pandemic increased the industry’s acceptance of decentralized clinical trial protocols, moving to an entirely virtual model without in-person interaction is unrealistic. This sort of hybrid approach allows researchers …

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Break barriers to clinical trial participation

Reducing Barriers to Participation in Clinical Trials for Rare Disease

Research teams who appreciate the unique needs of rare disease patients and invest in a white-glove approach on behalf of trial participants can reduce barriers to participation. For sponsors, clinical study teams, and site staff, this means easier patient recruitment at the beginning of a study and fewer dropouts throughout the duration of the trial—with …

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Personalized Clinical Trial Support During COVID-19

The COVID-19 pandemic created a “new normal” for clinical trial operations. The changes left many in the life sciences industry scrambling. However, Clincierge’s dedication to their patient-centric mission provided safety, stability, and continuity for patients and sponsors during an unprecedented time. Customized Support to Improve Your Study Performance At the start of each study, Clincierge …

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