Позитивные изменения, Том 3 №1, 2023. Positive changes. Volume 3, Issue 1 (2023)

Stop-Hemangioma

Remote Monitoring System for Children with Infantile Hemangiomas.

stop-hemangioma.ru

Stop-Hemangioma is a mobile app created as a personal assistant for parents of children with vascular anomalies. It was developed together with the engagement of physicians observing hemangiomas.

PROBLEM ADDRESSED

Vascular anomalies are the most common soft-tissue abnormalities in infants. Statistically, hemangiomas occur in 10 percent of newborn children, most often in girls. Only regular examinations by an expert in vascular malformations allow detecting the tumor growth, start the right treatment in time, avoid complications, and shorten the rehabilitation required.

However, parents and patients often encounter problems with access to world-class specialists specializing in the treatment of vascular anomalies. Geographic and economic factors also contribute to the number of complications of the disease.

The goal of the Stop-Hemangioma project is to reduce the number of complicated hemangiomas in children by implementing a remote monitoring system for young patients with vascular malformations.

METHODS USED TO ADDRESS THE PROBLEM

A team of doctors, programmers and engineers developed the Stop-Hemangioma project, which includes a mobile app and software package for monitoring children with hemangiomas. The project was launched with the support of the “Reach for Change” Foundation.

Parents of young patients diagnosed during a personal appointment and given recommendations for monitoring, can download the application and receive a login and password to their personal account by a consulting physician. The doctor selects an individual observation schedule, the parents fill out the diary, attaching the photos of the tumor. The specialist evaluates the diary records and photographs, assesses the growth of the tumor, any complications, decides whether a separate personal appointment is needed, and advises on choosing another doctor and signing up for an appointment if necessary. For any questions regarding the pathology detected, the patient and the physician can communicate via messenger.

All data is kept in private storage in depersonalized format, meeting all legal requirements to personal data protection, according to the project authors.

ACCOMPLISHMENTS AND AWARDS

Winner of the “Reach for Change” Foundation’s annual competition among impact startups (2021) in the “Large Project” category.

Participant in the “Moscow Polyclinic Science Lab” project aimed at developing research competencies and critical thinking of primary care specialists in Moscow (2022).

Winner of the Foundation for Assistance to Small Innovative Enterprises (FASIE) “Start-1” competition (2022).

FUNDS RAISED IN 2022

• A grant of 1.2 million rubles received from the “Reach for Change” Foundation.

• 300,000 rubles raised in donations.

• A grant of 4 million rubles from the FASIE.

WHAT WAS DONE LAST YEAR

• “Stop-Hemangioma” mobile app developed;

• a web version of the application tested;

• a Rospatent certificate of state registration of a software program obtained;

• response received from Roszdravnadzor’s All-Russian Medical Technology Research and Testing Institute for (VNIIIMT) concerning registration of the mobile app.

DIRECT RESULTS FOR 2022

• Android mobile application published in Play Market, NashStore, RuStore;

• Observation diaries for various hemangioma types developed;

• The rules of photographic evidence collection developed;

• Application tested at St. Vladimir Children’s City Clinical Hospital and Children’s City Polyclinic No. 125 of the Moscow City Health Department;

• Doctors involved in the Stop-Hemangioma project became members of the Russian Association of Pediatric Surgeons and the Russian Society for the Study of Vascular Anomalies.

SOCIAL EFFECTS ACHIEVED IN 2022

• 98 % satisfaction with the remote monitoring system among project participants;

• Increased parents’ awareness of hemangioma care, monitoring and treatment, including through access to proven medical literature via the mobile app;

• 130 children with hemangiomas monitored remotely;

• Personal appointments for children were reduced from 4 to 1 per month.

SOCIAL AND ECONOMIC IMPACT

Lack of neglected cases in the remote monitoring group, increased patient satisfaction in the remote monitoring group.

FINANCIAL SUSTAINABILITY MODEL

The project is currently being implemented with the help of a grant from the “Reach for Change” Foundation and the Foundation for Assistance to Small Innovative Enterprises. The project authors plan to start selling the mobile app via the marketplaces in the future. In addition, the application will include two paid subscription options – short-term monitoring (1 month, 1,000 rubles), and long-term (6 months, 5,000 rubles).

In January 2023, the authors of the project opened Gremiks LLC. The company will be engaged in scientific research in the problem field and developing artificial intelligence algorithms for integration into the mobile application.

INLIFE

General Developmental Programs of Physical Education and Sports Orientation for Children with Disabilities.

http://inlife.care

INLIFE Adaptive Sports Center is a project that teaches adaptive sports, including figure skating, to children with special needs.

PROBLEM ADDRESSED

Numerous studies have proven that physical education and sports are the most important methods of successful socialization, rehabilitation and adaptation to adult life in children and adolescents with disabilities. However, not all regions of the Russian Federation allow children with disabilities to attend sports sections or therapeutic physical education classes. The reasons are varied: from lack of specialists and infrastructure and low financial status of the parents of children with disabilities, to insufficient awareness among parents about the possibility of receiving habilitation assistance. A survey of parents, conducted by the INLIFE Adaptive Sports Center, showed that 95.7 % address the problem of their child’s rehabilitation on their own. At the same time, 100 % of parents are interested in receiving assistance from the state.

The INLIFE project is designed to create conditions for children with mental disabilities, autism spectrum disorders (ASD), attention deficit hyperactivity disorder (ADHD), delayed mental and speech development (DMSD), hearing-impaired children and children with a mild form of cerebral palsy to practice adaptive sports.

METHODS USED TO ADDRESS THE PROBLEM

INLIFE Adaptive Sports Center started in 2019 with figure skating training for children with mental disabilities. Two branches opened in Moscow region later; during the pandemic, the center was forced to go online. The Center founder is Zhanna Soroka, Master of Sports of the Soviet Union in figure skating and a member of the Moscow Figure Skating Federation.