clinical trial

rare disease awareness rare disease patients

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.

rare disease parents and family

Caring for Rare: Navigating a Complex Journey

A rare disease diagnosis poses more questions than answers for parents learning that their child has a severe and often untreatable condition. According to the National Organization for Rare Disorders (NORD), there are over 7,000 known rare diseases, with 90% of these having no effective treatment. Obtaining a diagnosis is only the first step and …

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newborn screening awareness month clinical trial

Newborn Screening Awareness Month: Creating a Federalized Screening Program

September is Newborn Screening Awareness Month Newborn Screening is a modern medical practice many believe to be the most successful public health program in United States history. Since the 1960s, every infant born in America receives a heel prick within the first 48 hours of life. The resulting dried blood is then tested for a …

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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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patient reimbursement patient payment clinical trial

Do You Know Which Patient Payment Method is Right for Your Clinical Trial?

Patient Payments: Frequently Asked Questions Do your clinical trial patients need stipends, reimbursements, or a combination of payment types? Not sure? Many study teams are unsure about the different types of patient payments or how to decide which ones are appropriate for their study.   Multiple payment options and country-specific requirements can seem overwhelming to a …

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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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Patient Travel During COVID-19: Beth’s Story

Standard travel may seem daunting to healthy individuals, but imagine the burdens and hurdles individuals with rare diseases, cancer, or cognitive disabilities must face while traveling during the COVID-19 Pandemic. Beth and her family are all too familiar with the routine financial and logistical burdens of traveling to her study visits, but the Pandemic proposed …

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