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Folia Health Technology Platform Used in First-of-its-Kind Real World Evidence Study for Sickle … | News

Folia Health Technology Platform Used in First-of-its-Kind Real World Evidence Study for Sickle … | News

BOSTON, Sept. 15, 2022 (Globe NEWSWIRE) — Nowadays, Folia Wellbeing declared the initiation of the ASCEND Research, a first-of-its-sort, at-house observational authentic-planet proof research in which folks residing with sickle cell condition (SCD) will use Folia’s impressive technology platform to keep track of their specific variations in signs or symptoms and treatment method use. The ASCEND Review, which is now enrolling people, is being conducted by Folia Health with funding from World Blood Therapeutics, Inc. (GBT).

The examine will use Folia’s application and proprietary analytics methodology to measure outcomes in SCD with the goal of uncovering insights about the true-world experiences of folks living with the affliction, like the use of Oxbryta® (voxelotor), GBT’s initial-in-course, at the time-each day oral therapy for the procedure of SCD.

ASCEND will seize and evaluate House Reported Results (HROs), enabling people with SCD, as effectively as their caregivers, to leverage their personal observations and lived working experience to improved fully grasp the effects of remedy and health events. No added clinic visits will be required for sufferers collaborating in this examine as all knowledge assortment will be executed remotely.

“There is a major require for additional granular, client-driven, high-high-quality facts to recognize the experience of people dwelling with sickle cell sickness and the affect of novel therapies like Oxbryta,” mentioned Nell Meosky Luo, CEO and Founder of Folia Wellbeing. “In order for progress in sickle mobile disorder to be improved understood, we will need to seize household-claimed evidence that closes the gap concerning data from regular endpoints gathered in medical trials and the serious-planet patient’s day-to-working day practical experience. The ASCEND review will benefit from the Folia mobile app or desktop platform to capture this proof straight from patients in actual time. We are thrilled to be working with GBT on these kinds of an remarkable endeavor to greater fully grasp and measure the outcomes that issue to folks residing with SCD.”

SCD is a scarce blood dysfunction that affects thousands and thousands worldwide in the United States, about 100,000 folks have the condition.1 It is most prevalent among these of sub-Saharan African descent, and is also additional possible to affect persons of Hispanic, Center Japanese, South Asian, and Southern European ancestry.1 SCD will cause the production of “sickled” or irregular hemoglobin, a protein carried by purple blood cells that carries oxygen to the physique.2 This abnormality in hemoglobin benefits in the development of the attribute sickle shape of red blood cells in its deoxygenated sort, therefore providing the condition its identify.3 Contrary to standard healthy red blood cells, the sickle shaped cells are sticky, rigid and, because of to their characteristic form, get trapped in blood vessels, blocking blood circulation to organs and producing infections and massive suffering.2 Troubles ensuing from a sickle mobile crisis, like stroke, acute chest syndrome, organ injury, other hip and joint issues, can be lifetime-threatening and in some instances cause premature dying.4

“GBT supports endeavours to improved comprehend and evaluate the activities of sufferers with sickle mobile disease,” said Alain Romero, PharmD, Ph.D., Senior Vice President and Head of International Health care Affairs at GBT. “We hope that applying the Folia Health system in the ASCEND Examine will produce new insights by enabling sickle mobile disease clients to observe their encounters and take part in meaningful investigate from their dwelling.”

Eligible members contain individuals age 13 and older who have been clinically identified with SCD, and caregivers of little ones age 4 and more mature with SCD. To discover extra about digital study participation and to indicator up, go to www.foliahealth.com/ascend.

About Folia Wellbeing

Folia is a client-driven Overall health-IOS (Personal Functioning Procedure) that allows people to simply get an lively function in their care, though contributing to precision diagnostics, affected person-centered drug progress, & far better care for sophisticated conditions. Folia’s wealthy longitudinal data and proprietary analytic solutions present a very important and lacking piece in the emergence of a residence-centered, facts-driven healthcare ecosystem. Find how to harness the electric power of affected person and caregiver expertise at www.foliahealth.com.


1. “Sickle Cell Sickness Details and Studies (SCD).” Centers for Sickness Manage and Prevention,  https://www.cdc.gov/ncbddd/sicklecell/information.html.

2. Gardner RV. Sickle Cell Condition: Advancements in Procedure. Ochsner J. 201818(4):377-389. doi:10.31486/toj.18.0076 

3. Hahn EV, Gillespie EB. Sickle cell anemia. Report of a scenario significantly improved by splenectomy. Experimental research of sickle cell formation. Arch Intern Med (Chic). 1927. February:39(2):233-254. doi: 10.1001/archinte.1927.00130020072006

4. “Sickle Mobile Condition.” Hematology.org, https://www.hematology.org/schooling/clients/anemia/sickle-cell-disorder

Folia Well being Make contact with:

Amanda Healey (analyze-associated)

+1 617-306-1282

[email protected]

Paula Mello Ferber (media)

+1 617-306-1282

[email protected]

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