SALTURK
Omega ran the field operations for the Turkish Hypertension and Kidney Diseases Association's study: 14 centres, a target of 1,970 participants; published in Blood Pressure (2010) with 250+ citations.
Patient-Centered Solutions
Inclusive Research & Rare Disease Association Partnerships
About 8 in every 100 people in Türkiye live with a rare disease. Through partnerships with rare disease patient associations, Omega reaches these patients at home: treatment monitoring, adherence observation and structured reporting for the association via OmegaCare home healthcare — under one operational roof.
The Türkiye Reality
"Rare" is not rare at all
In a population of 86 million, an estimated 5-7 million people live with a rare disease; the global orphan drug market grew from $91 billion in 2016 to over $200 billion in 2025. In this picture, inclusive research, accessible follow-up and adherence management are not optional — they are mandatory.
5–7 milyon
Estimated people living with a rare disease in Türkiye — about 8 in every 100
7 yıl
Average time to diagnosis in Türkiye (Europe: 5 years) — the diagnostic odyssey is long
~%11
Share of Türkiye's drug budget spent on rare disease medicines — access and sustainability are critical
%95
Stakeholders who want patient associations as active partners in decision processes (2026 survey)
Sources: Rare Diseases Federation, Rare Lives and Rare Diseases Summit-2026 Report (March 2026) · IQVIA/AİFD/EFPIA, Sustainable Value-Based Drug Pricing and Reimbursement Report (December 2025)
National Ecosystem
Türkiye is formally building its rare disease ecosystem
The national plan, data system, screening programme and coding transition are all accelerating. Every step of this build-out needs data and an operational partner — that is exactly where Omega stands for associations and sponsors.
National Action Plan 2023–2027
The Rare Diseases Health Strategy Document and Action Plan is in force with 5 pillars, 42 targets and 44 concrete actions. Türkiye is among the countries that have formalised a national rare disease strategy.
The data gap = research opportunity
The National Rare Disease Data System (established 2022) tracks 23,851 individuals across 2,082 diseases — far below the 5-7 million estimate. Natural history studies and patient registries are the most direct way to close that gap.
Strong newborn screening
The national programme covers 6 diseases with ~97% screening success; each year ~17,000 suspected cases are identified and ~5,000 reach definitive diagnosis and treatment. The early-diagnosis infrastructure keeps expanding.
Coding infrastructure is shifting
ICD-10 can accurately code only ~500 of ~8,000 rare diseases; ICD-11 represents ~5,500 and a national transition with Orphanet/ORPHA codes is on the agenda. Registry research is the evidence engine of this transition.
Sources: Rare Diseases Federation, Rare Lives and Rare Diseases Summit-2026 Report (March 2026) · IQVIA/AİFD/EFPIA, Sustainable Value-Based Drug Pricing and Reimbursement Report (December 2025)
The Programme Model
Association → Omega → Patient
A four-step model: build the association relationship, reach the population, follow the patient at home, and report the resulting data to the association and sponsor.
1
The association partnership is set up
Scope and goals are defined together; the collaboration protocol, KVKK/data-sharing framework, ethics committee and — where required — TİTCK processes are managed by Omega.
2
The population is reached
Eligible patients are identified through association member networks, existing patient registries and advocacy groups; enrolment runs on a proper ICF process — even at the patient's home.
3
Home-based follow-up begins
OmegaCare home visits deliver treatment monitoring, vital sign measurements, medication adherence observation and home sample collection when needed; TURP streams remote monitoring and device data around the clock.
4
Data is reported, value is produced
Adherence metrics are collected from IWRS reminders and survey data; associations and sponsors receive structured reports; registry data matures into real-world evidence (RWE).
Treatment Adherence Management
We monitor the treatment and organise adherence
We run a three-layer adherence network so association patients stay on treatment: reminders, remote monitoring and in-home observation — all producing recorded data.
Reminder and survey systems
On Omega's IWRS infrastructure, medication times, appointments and adverse-event prompts are delivered automatically via IVR, SMS and WhatsApp; two-way communication tracks adherence for every participant.
Remote monitoring (TURP)
The SPICE-certified, Ministry of Health USBS-approved TURP platform monitors blood pressure, oxygen saturation, ECG and glucose remotely through 15+ FDA/CE/MoH-approved devices — data end-to-end encrypted and stored in Türkiye.
Home visits and treatment monitoring
Protocol-compliant home visits with OmegaCare's 45+ specialist physicians and 120+ home-care staff: treatment response monitoring, home sample collection, and observed, documented medication use.
24/7 support line
OmegaCare's call centre and patient line operate around the clock: questions, appointment management and emergency response run through a single number; e-Nabız and USBS integration keeps records whole.
OmegaCare
The backbone of home follow-up: OmegaCare
OmegaCare, Omega's home healthcare affiliate specialized in clinical research, is the field arm of association programmes: oncology home follow-up, home sample collection, protocol-compliant research visits and a 24/7 patient line.
2019
first home healthcare service specialized in clinical research
1M+
home visits delivered
45+
specialist physicians
120+
home-care staff (ATT)
USBS
MoH-approved remote health + e-Nabız
7/24
call centre and patient line
Value & Access
Association data becomes evidence at the reimbursement table
~%80
Roughly 80% of the 400+ medicines on SGK's import list (Ek-4/C) are rare disease medicines — the list is effectively a rare disease list. Access speaks with data.
2017
SMA therapy has been reimbursed in Türkiye since 2017 — ahead of several Western European countries. Locally produced evidence feeds an ecosystem that can decide fast.
%3
Access to innovative medicines in Türkiye stands at 3% (EU average 46%) — the gap to close is large. Value-based frameworks are bringing disease severity and equity components (rare diseases, paediatric populations) into decisions; registry/RWE data from association partnerships is the evidence base for those negotiations.
From evidence to value: Registry data from association partnerships feeds directly into Omega's health economics and outcomes research (HEOR) and health technology assessment (HTA) services — into value-based dossiers built on MCDA, disease severity and equity components.
Sources: Rare Diseases Federation, Rare Lives and Rare Diseases Summit-2026 Report (March 2026) · IQVIA/AİFD/EFPIA, Sustainable Value-Based Drug Pricing and Reimbursement Report (December 2025)
Evidence
We already work with associations
We have run field operations for national association studies and massive patient registries; the same discipline now extends to rare disease programmes.
CREDIT
With the Turkish Society of Nephrology, the national CKD prevalence study: 10,748 adults, 15.7% prevalence; Süleymanlar et al. (2010), 600+ citations.
CIDP
The CIDP epidemiological registry — Omega's largest patient registry study: 134,448 patients across secondary and tertiary care, longitudinal real-world data in a rare neurological population.
Our Inclusivity Commitments
Inclusivity is the definition of how this programme runs
Geographic reach across all 81 provinces
We do not wait for the patient to appear at a site: OmegaCare home visits and Omega Depot's 81-province distribution network carry diagnosis and follow-up regardless of geography.
Home-based model for limited mobility
Limited mobility is common in rare disease populations; visit-window management, source-data documentation and sample collection happen at home, fully protocol-compliant.
Paediatric approach
About half of rare diseases begin in childhood; age-appropriate communication, paediatric advocacy collaborations and family-centred follow-up are built into the model.
Data protection: KVKK and GDPR
All patient data is processed under KVKK and GDPR; TURP data stays end-to-end encrypted on servers in Türkiye, and reporting is produced at an anonymised level.
ICF discipline
A complete informed consent (ICF) process runs for every participant; consent is documented, auditable and — compliant with Turkish legislation — can even be obtained at home.
Communication in 8 languages
Our web presence and patient communication materials exist in 8 languages; local patient associations and international sponsors are served at the same standard.
FAQ
Frequently Asked Questions
How does our association join the programme?
Reach us through the quote form or direct contact. We start with a discovery call to understand your patient population, existing registry infrastructure and priorities; then we set up the collaboration protocol, KVKK/data-sharing framework and, where required, the ethics committee process together.
How is patient data protected?
All data is processed in line with KVKK and GDPR. The TURP platform is approved under the Ministry of Health USBS scheme and keeps data end-to-end encrypted on servers in Türkiye; reports to associations and sponsors are anonymised. A complete ICF process runs for every participant.
How is treatment adherence monitored and reported?
Three channels work together: IWRS-based reminders (IVR/SMS/WhatsApp) prompt dosing times and record responses; TURP remote monitoring streams vital data; OmegaCare home visits observe medication use in person. Adherence metrics are shared with the association and sponsor in regular reports.
Which study types does the model combine with?
It combines directly with patient registries and natural history studies, real-world evidence (RWE) studies, Phase I-IV clinical trials, compassionate use programmes and decentralised trial designs. It runs under the same roof as our rare disease therapeutic expertise and ATMP/gene therapy programmes.
How is the generated data used in reimbursement negotiations?
Registry data from association partnerships matures into real-world evidence showing disease burden, treatment patterns and adherence behaviour. That evidence feeds value-based approaches (MCDA, disease severity and equity components) and HTA/reimbursement dossiers — supported end to end by Omega's HEOR and HTA services.
Let's meet your association and follow your patients at home
In our rare disease association partnerships we run treatment monitoring, adherence management and registry data production under one roof. Let's design your programme in a 30-minute call.