IndoUSrare RARE-X india feasibility study


IndoUSrare has partnered with RARE-X to help understand India’s rare disease landscape and is conducting a feasibility study in India to understand the barriers to enabling patient-owned health data registries for national and international data sharing.

Currently, India has no law protecting patient data privacy as the Health Insurance Portability and Accountability Act (HIPAA) does in the United States, or General Data Protection Rules (GDPR) in Europe, but new legislation is proposed to help overcome this deficit.

India’s Personal Data Protection Bill, which is currently underway, would help standardize and regulate the collection, storage, sharing, and use of digital health data. As drafted, the legislation would provide patients with control over their data and allow anonymized health data to be used for public health purposes.

IndoUSrare is working with RARE-X to help assess the feasibility of a patient-owned registry in India, which can potentially serve as a model for other low- and middle-income countries. We believe RARE-X can make a significant difference for the Indian rare disease community by giving patients of Indian origin increased visibility in a global setting.

Most existing databases for rare disease biomedical research are curated in the US and EU, and hence are severely lacking in diversity; the Indian population is not proportionately represented in these foundational databases. In the current environment of increasingly data-driven research, this would mean that those who do not exist in these databases will not be considered in research programs relying on such high quality, curated databases. Additionally, there is increasing awareness that patients and caregivers are the best stewards of their own health information and should have the authority to share their data for research leading to the greater good of Science and Medicine.

Building on these points, RARE-X aims to create a patients-owned database for global data-sharing collaborations.

RARE-X is a non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.

RARE- X is piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients.

RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring, and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers, and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).

RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research, development and care, around the world and in all communities.

IndoUSrare and RARE-X Conduct Feasibility Study For A Patient-Owned Health Data Collection Program for India

1v1.lol unblocked google sites unblocked bit life unblocked slope unblocked yohoho unblocked io games unblocked drive mad unblocked 1v1.lol unblocked io games krunker.io 1v1.lol
melbet megapari 1win giriş melbet giriş melbet giriş melbet melbet giriş onbahis giriş megapari
Kilit taşı fiyatları Kilit taşı Parke taşı Parke taşı fiyatları
Kilit taşı fiyatları Kilit taşı Parke taşı Parke taşı fiyatları
Akücü akumyolda.com akücü akümyoldaİnci akü 60 amper inci akü 60 amper akumyolda.comAkü yol yardım olarak akü takviye ve değişimi hzmetleri sunuyoruz. akü yol yardım İngilizce Türkçe çeviri ingilizceturkce.gen.tr ile ingilizce türkçe çeviriAlçalan burç hesaplama sitesi hesaparaclari.com hesaparaclari.comTranslate to English with translatedict.com TranslateDictTranslate Spanish to English audio with spanishenglish.comTranslate Spanish to English audio with spanishenglish.comCalculatorcafe helps to calculate loans as a loan calculator.Calculatorcafe.com
bahis10bets.com betvole1.com casinomaxi-giris.com interbahis-giris1.com klasbahis1.com mobilbahisguncelgiris1.com piabetgiris1.com tipobettgiris.com tumbetgiris1.com betboro 1xbet giriş
escort bursa escort gorukle
İngilizce Türkçe çeviri siteleri kullanıcıların metinleri veya belgeleri yükleyerek anında tercüme yapmalarını sağlayan platformlardır Genellikle temel çeviri ihtiyaçlarını karşılamak için kullanılır ve geniş bir kullanıcı kitlesine hizmet verir. Ancak, tam anlamıyla doğru ve dilbilgisine uygun çeviriler için profesyonel çeviri hizmetlerine başvurmak daha güvenilir olabilir. Bu siteler, hızlı ve pratik bir çözüm sunarken, özellikle hassas veya teknik metinlerin çevirisinde profesyonel bir çevirmenin becerileri ve deneyimi gerekebilir.ingilizceturkce.gen.tr
Spanish to English translation involves accurately conveying not only the words but also the meaning, tone, and cultural nuances of the original text. Skilled translators proficient in both Spanish and English are essential to ensure accurate and effective translations. They must have a deep understanding of both languages' grammar, vocabulary, and idiomatic expressions to deliver high-quality translations. Spanish to English translation is widely used in various fields, including business, literature, media, and international communication. It plays a vital role in enabling cross-cultural understanding and facilitating global interactions.spanishenglish.net