Cystic Fibrosis Research and the Perfect Partnership

For the first time, two of the world’s largest Cystic Fibrosis (CF) charities, UK’s CF Trust and CF Canada, have joined hands for an international study.

They will partner in the Trust’s CLIMB CF study to test the value of using home monitoring devices to track the health status and treatment of children with CF.

What is CLIMB CF?

Under the auspices of The Cystic Fibrosis Foundation, the annual CLIMB CF fundraising event raises research monies to “find a cure for cystic fibrosis, and to also provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.”

The Trust underwrites research to treat and cure CF. Its prime focus is to make sure people with CF are given suitable medical care and ongoing support.

Due to the expense involved, the Trust doesn’t fund late-stage clinical trials but is a major contributor to early-stage pilot studies and in setting the stage for research in later- stage trials.

At present, CF Trust is funding one study in Australia, four in North America, and numerous studies in various parts of Europe.

The new CLIMB-CF study is also affiliated with the Trust’s Smart Care Program. Smart Care provides an ongoing concerted attempt to assess how today’s hi-tech electronics and large data pools might be used to ease the exchange of information, simplify care and grant greater health control to those with CF.

With that program’s support, CF centers in the UK carry out related research studies.

CF Trust also supports young people aged 14-25, living with CF or close to someone with that condition.

What is the Youth Advisory Group?

These folks comprise the Youth Advisory Group (YAG,) an association called together to “make their voices known and to influence the work of the Trust.” Members are encouraged to share their experience and opinions about living with CF.

YAG meets monthly, in an online hangout, with the Trust’s Youth Empowerment Officer. It’s not only a time of sharing and mutual support, but is also a chance to learn new things and to become aware of upcoming projects or events.

In all ways, the CF Trust describes their personal long-term mission to be “investing in science to correct the basic defect that causes cystic fibrosis, so that we can transform the lives of everyone with the condition.”

For CF Canada, located in the Province of Ontario, maintaining their mission means “working towards our vision of a world without Cystic Fibrosis.”

Their slogan is “Breathing life into the future.”

More about CF Canada

CF Canada is reportedly one of the world’s largest non-profit, citizen-based research groups that functions independently of government involvement.

The mandate for CF Canada is to help those with Cystic Fibrosis through research projects and by assuring they receive high-quality care. This is reflected in their advocacy initiatives and their efforts to boost public awareness regarding Cystic Fibrosis.

One of the group’s crowning achievements is their Virtual Education Program. Choosing topics related to the needs of those with CF and their caregivers, a series of six educational webinars are available online.

CF Canada funds research studies in numerous areas of need for the CF population and their families. Topical examples of their studies include lung inflammation and infections-known in the field as the largest growing area of research.

Additional studies center on quality of quality of life issues, the role of CFTR proteins in the production of thick, sticky mucus in those with CF, CF-related diabetes, and gene therapy.

Studies they fund are typically maintained for a three-year period.

Canada’s advancements in cystic fibrosis

At present, Canadian scientists are in the forefront of current research news. A recent study has shown Canadians with CF are living 10 years longer than those in the U.S.

Canada CF has determined the survival statistics are due to variances in diet, health insurance, and lung transplants.

They have determined the greatest factor to be medical insurance. 45% of Americans with CF are on Medicaid, with many restrictions placed on patient’s access to specialized care. In contrast, Canada’s universal care approach guarantees all patients receive the same level of care.

Goals of the future study

In the UK-Canadian CLIMB-CF study, the joint effort of these two exceptional research programs is destined to have a marked impact on the lives of those with CF.

Regarding quality of life for those with CF, Sammie Read tells us, “Every person with cystic fibrosis should have the tools they need to manage their health and treatments in a way that enables them to stay healthy while living as fully and independently as possible.”

To that end, the CLIMB-CF study is committed to and will focus on the use of home monitoring equipment to examine how such technologies can be used to support and improve CF care.

Research lead for this innovative approach will come from London’s Imperial College while the London Royal Brompton Hospital will be the coordinator.

Several other hospitals in the UK will also participate, to include three hospitals in the North of Scotland’s Respiratory Network.

Meanwhile, CF Canada will be rolling-out the CLIMB-CF study in two of their medical clinics, sealing the study’s international status.

Specifics of the study

In this study, each person enrolled will be given equipment to monitor their lung function, activity, body temperature, heart rate, oxygen level and body weight. (Research describes the functions of an activity monitor to measure distances walked, calorie consumption and, in some cases, the quality of sleep.)

Each person will also receive medical testing devices with Bluetooth capability. These devices will be linked to a cell phone with a unique app designed for the study.

In synch with the Trust’s mission statement to include young people in their work, design of the app was influenced by members of the Trust’s YAP Group.

At the start of the study, the young people and their families will be trained and overseen in use of the electronic devices and the process for recording their findings.

The body of the study will focus on satisfaction of and degree endorsement for the home monitoring system.

Phase I of the CLIMB-CF study will run for 6 weeks. During this period, participants will continue their routine clinical appointments.

Long-term implications of this study include family heath control in their ability to actively participate in care needs, allowing for child and family convenience by reducing time and travel for routine clinic visits and avoidance of negative climate factors, and the ability to recognize acute conditions in a timely manner, such as lung infections and extreme weight loss.

Final thoughts

Study results of CLIMB-CP may spurn additional studies on the use of electronic devices in meeting such needs as this.

Diabetes research might possibly be one of them. CF Trust informs us that while only 50% of those living today with CF will live to see their 40th birthday, people with CF are actually living longer. Since CF damages the pancreas, insulin production and usage complications are a result, causing CF-related diabetes to be more common.