Education

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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covid-19 patient safety travel recruitment retention

COVID-19 Solutions: Prioritizing Safety, Recruitment, and Retention

Prioritizing Patient Safety, Recruitment, and Retention Almost two years after its initial outbreak, COVID-19 continues to cause numerous problems for sites, sponsors, and patients enrolled in clinical trials. New disease variants are creating an increase in cases, resulting in additional barriers to clinical trial participation. For patients in the rare disease space, these issues further …

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LGBTQ pride month

Celebrating Diversity: LGBTQ Pride Month 2021

LGBTQ Pride Month 2021 Every June, Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ) communities across the globe celebrate Pride Month, honoring those who participated in the Stonewall Riots in June of 1969. These demonstrations took place over a week and resulted from a violent police raid on the Stonewall Inn in Greenwich Village, New York, …

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Improving Patient Diversity, Access and Awareness in Rare Disease Clinical Trials

Members of ethnic communities around the globe suffer from rare diseases unique to their demographic group. Their genetic makeup makes them more susceptible to hereditary issues which affect generation after generation. Designing a trial and selecting participants with diverse backgrounds that proportionally represent each demographic group is one of the first steps a sponsor can …

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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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Cross-Border Patient Travel: Critical Details You Don’t Want to Miss

Recruiting and enrolling patients is often an uphill battle for sponsors of rare and ultra-rare disease trials. The unique patient populations are located across the globe, presenting significant logistical challenges to trial sponsors and sites. The logistical and financial burdens that families face are often overwhelming. Clincierge coordinates all of the complex details related to …

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