World-class options abroad¶
For patients who are able to travel or pay privately: who are the world's leading CLL experts, what exists only abroad, and when could going there help? This page names centres and people to discuss with the treating haematologist; it recommends none of them. Unconfirmed marks information not confirmed on the official page.
The direct answer [I]. No country has been shown to achieve better CLL survival than Sweden. Its results are in the top international tier, though not uniquely best, and it lags mainly in how fast it pays for the newest drugs. Travel adds most when Swedish options run out: after relapse on both main drug classes, or in Richter transformation. Before that, the most useful addition is an expert opinion, and it matters most when the diagnosis is unusual or the biology high-risk.
| Situation | Does going abroad help? | Why |
|---|---|---|
| Watch-and-wait | No proven benefit [E] | Early treatment has never prolonged survival, even in high-risk subgroups (CLL12; CLL12 genetics) |
| First treatment | Rarely [I] | The same EU-approved regimens at home, plus the leading European first-line trial, CLL18/MOIRAI, at Lund |
| TP53-aberrant or other high-risk disease | Possibly, as a one-off opinion [I] | Sweden's first choice, continuous BTK inhibition, matches EHA (VP8.2 §11.1; EHA 2026); foreign alternatives are investigational or rest on single-arm data |
| Relapse after both a BTK and a BCL2 inhibitor | Plausibly [I] | US CAR-T and trials not open in the Nordics, though unproven in randomised trials; allogeneic transplant, the only established potentially curative therapy, is available at home (VP8.2 ch. 15) |
| Richter transformation | Possibly, for trials [I] | Trials come first (Richter transformation); a search abroad must not delay treatment at home |
How Sweden compares¶
| Comparison | Sweden | Elsewhere | Caveat |
|---|---|---|---|
| CLL, 5-year relative survival | 86.3%, diagnosed 2007–2024 (national registry) | US 90.2%, 2016–2022 (SEER) | Different periods and coverage; the Swedish registry includes SLL only from 2025 |
| CLL, 5-year relative survival, 2009–2011 | — | Germany 80.2%, US 82.4% | "Major differences in survival between countries were not observed" |
| All adult lymphoid cancers, 5-year net survival, 2010–14 (CONCORD-3) | 66.7%, 11th of 18 high-income countries | Switzerland 72.0%, Australia 71.2%, Denmark 70.9%, US 68.1%, Germany 67.9%, UK 64.9% | Mixes CLL with aggressive lymphomas and myeloma |
Sources: KLL registry report 2025; SEER; Pulte 2016 (abstract only); CONCORD-3 [E]. The rank is our count [I].
[I] The CLL-specific gaps are within what period, coverage, coding and the intensity of early diagnosis can explain; they do not show differences in care. Earlier diagnosis alone lifts survival counted from diagnosis; in Sweden the share needing treatment at diagnosis fell from 15% to 10% (registry report) [E].
Does a top centre improve survival? US studies link care by CLL specialists or at academic centres with longer survival (Mayo Clinic: overall survival 10.5 vs 8.4 years, Shanafelt 2012, abstract only; similar in US national data, conference/secondary), but they are confounded by age, insurance and referral. In public, guideline-driven systems the gap shrinks or disappears: British Columbia found no difference between academic and community treatment (Huang 2021, abstract only), and Swedish regions show no significant differences in survival after treatment start [E]. No study compares patients who travelled abroad with those treated at home. [I] Where Sweden lags is reimbursement of the newest drugs, such as first-line pirtobrutinib; commercial CAR-T for CLL is missing in the whole EU.
World-leading CLL experts and centres¶
Selection criteria. "Best" cannot be objectively proven: no country publishes outcome data for individual CLL doctors. The ranking therefore uses verifiable leadership: first or senior authorship of pivotal trials 2018–2026; authorship of the NCCN 2026, EHA 2026 and iwCLL 2018 guidelines; roles in ERIC, the European Research Initiative on CLL; and recent CLL papers and recruiting trials. Rating sites, reviews and hospital rankings are not used as evidence; these signals measure engagement with the disease, not bedside quality. Affiliations come from 2025–26 papers or official pages. Only the Cologne and Ulm clinic pages confirm that named experts see outside patients [E].
North America¶
| Centre | People and role | Why they rank | Route from Sweden |
|---|---|---|---|
| Dana-Farber, Boston | Jennifer R. Brown, director of the CLL Center (profile); Matthew S. Davids, chief of lymphoma (profile) | Brown: first author of ALPINE and AMPLIFY, NCCN panel. Davids: first author of BRUIN CLL-322 | Online opinion, $3,000; in person via the international office, prepaid |
| MD Anderson, Houston | William G. Wierda; Nitin Jain; Jan A. Burger (2025–26 papers) | Wierda: listed first on the NCCN panel, first author of CAPTIVATE, senior author of TRANSCEND CLL 004 and BRUIN CLL-314. Burger: first author of RESONATE-2 | No remote opinion (page); in person, no referral needed, deposit first (FAQ) |
| Ohio State, Columbus | Jennifer A. Woyach, director of hematology (news, unconfirmed); Kerry A. Rogers | Woyach: first author of A041202 and BRUIN CLL-314, NCCN panel; the largest recruiting CLL portfolio in North America (ClinicalTrials.gov) | Online opinion, about $800, and international video consultations (both unconfirmed) |
| Fred Hutch, Seattle | Mazyar Shadman, deputy chief medical officer (profile) | Senior author of ALPINE; first author of SEQUOIA at 5 years | No remote programme found; international service |
| Mayo Clinic, Rochester | Sameer A. Parikh; Neil E. Kay; Lindsey E. Roeker; Paul J. Hampel (2026 papers) | A deep team; Parikh sits on the NCCN panel; Kay was senior author of the E1912 update | No remote opinion verified; a free record review decides whether Mayo can add anything (process, unconfirmed) |
| Also verified | Memorial Sloan Kettering (MSK; Meghan C. Thompson); Stanford (Tait D. Shanafelt); City of Hope (Tanya Siddiqi); UC San Diego (Thomas J. Kipps) | All on the NCCN panel; first authors of E1912 (Shanafelt) and TRANSCEND CLL 004 (Siddiqi); Kipps was senior author of iwCLL 2018 | MSK remote opinion, price not published; Stanford online opinion, $975; City of Hope "country-dependent" (FAQ, unconfirmed) |
2026 affiliations: PMID 42733538, 42827116, 42800804, 42835289 [E]. No Canadian centre led any of the pivotal trials listed. Moved [E]: John C. Byrd now directs UPMC Hillman, Pittsburgh (UPMC); Lindsey Roeker is at Mayo, not MSK; Deborah Stephens at UNC Lineberger, not Huntsman (UNC).
Europe and the UK¶
| Centre | People and role | Why they rank | Route from Sweden |
|---|---|---|---|
| University Hospital Cologne / German CLL Study Group | Michael Hallek, director of Internal Medicine I, founder and head of the study group; Barbara Eichhorst, head of the CLL second-opinion clinic; Othman Al-Sawaf; Kirsten Fischer | Ran CLL14, CLL13, CLL17 and CLL18; Eichhorst is first author of EHA 2026; Hallek chaired iwCLL 2015–2021 | International Office: remote or in-person opinion, deposit first. The CLL clinic and Hallek's private clinic give second opinions |
| San Raffaele, Milan | Paolo Ghia, ERIC president; Lydia Scarfò, ERIC board | ERIC writes the European TP53 and IGHV testing recommendations; Ghia co-wrote EHA 2026 and has the highest recent CLL output in Europe | Online second opinions (page from 2023) |
| Amsterdam UMC / HOVON | Arnon Kater, chair of EHA's CLL working group (per ERIC) | First author of GLOW and the MURANO final analysis | No international-patient page found |
| Rigshospitalet, Copenhagen | Carsten Utoft Niemann, chair of the Nordic CLL Study Group (profile) | EHA 2026; ERIC board; first author of GLOW at 67 months | No service for foreign patients. A Swedish doctor's referral under EU rules; the region must give a date and place within 8 weekdays; deposit possible (Danish contact point) |
| Ulm | Stephan Stilgenbauer, head of the CLL section (Ulm, not Homburg) | Reference laboratory for German and ERIC TP53 and IGHV testing | International office by e-mail; CLL clinic |
| Leeds | Talha Munir, Leeds Teaching Hospitals | First author of the UK FLAIR trial papers (2024; 2025) | Private Patients Office |
| Specialist and genomics leaders | Brno (Šárka Pospíšilová); Thessaloniki (Kostas Stamatopoulos); Novara (Gianluca Gaidano); Bellinzona (Davide Rossi); Barcelona (Elías Campo; Francesc Bosch); Oxford (Toby Eyre; Anna Schuh); Paris Pitié-Salpêtrière (Frédéric Davi) | EHA 2026, ERIC roles, reference laboratories | Mostly doctor-to-doctor or laboratory-to-laboratory; Zurich (Thorsten Zenz) offers a paid written opinion |
Sources: EHA 2026; ERIC; Cologne; 2026 affiliations, for example PMID 42659576, 42786134, 42757031 [E]. Several official pages are undated.
Australia and elsewhere¶
| Centre | People and role | Why they rank | Route from Sweden |
|---|---|---|---|
| Peter MacCallum / Royal Melbourne / WEHI | Andrew W. Roberts; John F. Seymour; Mary Ann Anderson; Philip A. Thompson (formerly MD Anderson) | The venetoclax pioneers: first authors of the first-in-human study (Roberts) and MURANO (Seymour) | No remote opinion verified. Self-paid: Sweden's reciprocal agreement excludes travel for treatment (Services Australia, unconfirmed) |
| Alfred Health / Monash, Melbourne | Constantine S. Tam | First author of SEQUOIA | Self-paid (Alfred Health) |
Israel has two active leaders, Tamar Tadmor (EHA 2026 co-author) and Yair Herishanu (ERIC board) [E], of limited practical relevance from Sweden [I]. No East Asian centre showed comparable CLL leadership; Japan and Korea were not assessed in depth.
Getting a world-class second opinion¶
[I] For patients who are able to travel or pay privately, this is the highest-value step, and it moves no treatment abroad. Use the region-funded Swedish ny medicinsk bedömning first (Second opinion). An international opinion adds most for unusual pathology, TP53 aberration, a complex karyotype, disagreement between Swedish teams, or reassurance about watch-and-wait.
Remote written opinions [E]. Offered to patients abroad by Dana-Farber, MSK, Stanford, Ohio State and City of Hope (both unconfirmed), Cologne, Zurich and the Royal Marsden in London; links and prices are in the tables above. Two caveats for Sweden: Dana-Farber excludes some countries without naming them, and Stanford last confirmed international eligibility in 2020. Not open: Cleveland Clinic's MyConsult explicitly excludes Sweden; Weill Cornell's online opinion is US-only (unconfirmed); MD Anderson offers none. [I] No programme promises a named expert (Dana-Farber's opinion comes from "a Dana-Farber medical oncologist"), and the Royal Marsden's CLL research leadership is not evidenced at the level of the others.
In person in Europe [E]. Cologne publishes the clearest route: its International Office usually confirms receipt within 24 hours and wants the estimated cost paid before arrival, and its CLL clinic offers second opinions (table above). Copenhagen's route is on Second opinion. [I] Doctor-to-doctor contact through the Swedish CLL leads, who already work with Cologne, Copenhagen and Amsterdam on CLL13, CLL17 and CLL18, may be faster.
Expert pathology and genetics [E]. These run professional to professional:
- Lymph-node histology: the Kiel Lymph Node Registry, a reference centre for lymphoma pathology (UKSH), Elías Campo's group at Hospital Clínic, Barcelona (profile), HMDS in Leeds (HMDS) and MD Anderson's pathology service for physicians. None publishes an international price or shipping protocol. Why review matters: The diagnosis.
- TP53 and IGHV: ERIC's reference networks (11 TP53 and 7 IGHV laboratories) help laboratories set up testing, analysing their samples in the meantime; the IGHV network also runs an interpretation help desk. Whether they take routine single cases is unclear. The Nordic reference is Clinical Genetics, Uppsala (TP53; IG). [I] Borderline results would go from the Swedish laboratory to Uppsala, then to a foreign ERIC centre, requested by the haematologist.
Steps:
- Agree it with the Swedish haematologist, who should receive the report and ideally talk to the expert [I].
- Collect the records (Records checklist) and have them translated into English, professionally for Dana-Farber; Cologne, Ulm and Zurich also accept German [E].
- Let the institutions move the tissue: the receiving centre requests slides or blocks, and Swedish pathology sends them if the biobank agrees (The diagnosis). Dana-Farber requires payment in full before processing pathology (financial information) [E].
- Ask precise questions [I]: CLL or SLL, with transformation and look-alikes excluded? An iwCLL indication now? Which tests are missing? What would they choose if treatment were needed, how does that differ from the Swedish guideline, and which trials reachable from Sweden fit?
Treatments and trials abroad¶
First-line pirtobrutinib is a payment question, not a travel question [I]. Pirtobrutinib (Jaypirca) is a non-covalent BTK inhibitor, not interchangeable with the covalent ones (Treatment landscape). Its status [E]:
- EU: authorised as monotherapy for CLL in any line on 29 July 2026, conditionally, on interim data (EMA).
- US: approved on 2 October 2026 for untreated CLL without known del(17p) (FDA).
- Sweden: subsidised from 1 October 2026 only after a BTK inhibitor; 104,327 SEK a month at pharmacy price (TLV), paid in full outside the subsidy (1177). [I] That is about 1.25 million SEK a year.
- Guidelines: EHA 2026 declined to recommend it first line, because there are no data on giving a covalent BTK inhibitor afterwards (EHA 2026); the Swedish guideline of January 2026 predates the approvals.
[I] A Swedish doctor could prescribe it outside the subsidy, so no travel is needed. Whether one would, and whether Skåne would continue a self-paid start, is unknown; no regional policy was found. No randomised trial shows better survival than with Swedish first-line standards: BRUIN CLL-313 compared it with bendamustine-rituximab, and CLL-314 compared response rates with ibrutinib (CLL-313; CLL-314).
CAR-T is the one product that only travel unlocks [I]. Liso-cel (Breyanzi) has US accelerated approval for CLL after both a BTK and a BCL2 inhibitor; 45% responded and 20% reached complete remission, which was usually durable (US label; TRANSCEND CLL 004, abstract only) [E]. It has no EU CLL indication, Sweden allows CLL CAR-T only in trials, and the phase 3 with planned Swedish sites was withdrawn (EMA; VP8.2 ch. 15; NCT06205290) [E]. The product alone lists at £297,000 per infusion in the UK (NICE); the US price could not be verified. [I] It matters only after both drug classes have failed, which may be years away or never.
Drugs approved only in China [E]. Sonrotoclax and lisaftoclax are approved for relapsed CLL only in China (sonrotoclax; lisaftoclax). A Swedish licence (licensförskrivning) requires that approved alternatives cannot be used (TLV). [I] Importing them makes little sense while sonrotoclax trials recruit in Sweden, including at Lund (NCT06943872).
| Situation | Trials reachable in Sweden or Copenhagen | Trials only abroad |
|---|---|---|
| No treatment indication | None recruiting | EVOLVE: early vs delayed treatment; US and Canada only |
| First line | CLL18/MOIRAI at Lund (EU CT 2023-510294-34-00; planned to close Q1 2027); BELLWAVE-011 and BGB-11417-304 at Karolinska | CLL16 (Germany; high risk); A042302 (US; older patients); SOUNDTRACK-C1 (bispecific consolidation; US, UK, Canada, Turkey, Australia) |
| Relapse | Sonrotoclax phase 3 (Lund); BTK-degrader phase 3 (Gothenburg, Stockholm); bispecific trials (Copenhagen, Odense; Örebro planned) | CaDAnCe-302, NX-5948-306, DAYBreak CLL-201, ROCKET-CLL, BELLWAVE-010, GLORA |
| Richter transformation | CLL-RT1 (Copenhagen); CLLRT2 (Denmark, not yet recruiting) | PIRAMID (US, not yet recruiting); GELLC9 (Spain; status may be stale) |
Registries read 7 October 2026; details in Clinical trials [E]. [I] At first line, trials abroad trade proven standards for unproven regimens plus months of visits. No US eligibility text found requires residency, but each site's international clearance and billing decide; whether any listed trial accepts a Sweden resident is unverified.
Practicalities and risks¶
| Where | Swedish reimbursement | In practice |
|---|---|---|
| EU/EEA | Försäkringskassan repays public or private care afterwards, capped at the Swedish cost minus the patient fee, and only for care the regions would fund; no travel or lodging. Prior authorisation (S2), which also covers travel, only if the Swedish wait is not medically defensible | Pay first, often as a deposit; decisions take about three months, currently longer |
| Switzerland, UK | Only via S2 | [I] Assume a private second opinion is not repaid |
| US, Canada, Australia | None | Self-paid, with deposits based on an estimate (MD Anderson; MSK) |
Sources: Försäkringskassan, 14 September 2026; Försäkringskassan for providers; Lag 2013:513 [E].
Not covered. [I] Treatment Swedish public care does not offer, such as CAR-T for CLL or first-line pirtobrutinib, is unlikely to be repaid even in the EU. Swedish patient insurance does not cover care abroad unless the region paid for it (1177, 2022) [E]. [S] Travel insurance is unlikely to cover a trip made in order to be treated; this was not verified.
US visas: the sources conflict. The Visa Waiver Program (ESTA) lists "medical treatment" as a permitted purpose (CBP, unconfirmed), whereas the NIH Clinical Center says its international patients need a B-2 visa (NIH, unconfirmed) [E]. Sweden's eligibility was not re-checked. [I] Ask the centre's international office and the US embassy before booking.
Staying near the centre at the start [E]:
- Venetoclax: a 5-week ramp-up, with blood tests 6–8 and 24 hours after the first doses, in hospital if tumour burden is high (SmPC). [I] Starting abroad means 5–6 weeks there unless home monitoring is agreed.
- Obinutuzumab: 8 infusions over 6 months (EVOLVE protocol).
- CAR-T: a median 36 days from cell collection to infusion, then at least two weeks near a healthcare facility (US label; FDA).
- Trials: protocol visits at the site, often for years.
Keep the Swedish team as home base [I]. The safest pattern is expert review abroad and treatment at home, where the team that will follow the patient for years handles tumour-lysis checks, admissions and complications. Before any treatment or trial abroad, agree in writing who manages late low blood counts, infections and low antibody levels, who supplies blood products and immunoglobulin, who receives trial safety reports and who pays for complications.
Avoid unregulated clinics. The EMA warns patients "against using unregulated cell-based therapies which may not be safe or effective" (EMA, 2020, unconfirmed) [E]. [I] Paying more does not make an unproven product safer; anything offered abroad should be an approved medicine or part of a registered trial.
For patients who can pay privately: a sensible order¶
These are options to discuss with the treating haematologist, not a treatment plan [I]:
- Settle the facts at home: diagnosis, stage, and TP53 and IGHV when relevant (Is treatment needed now?).
- Use the Swedish second opinion first, at Karolinska or Uppsala, with haematopathology review in Lund. The region pays, travel included if the referral is marked correctly (Second opinion; Specialists and centres).
- Add one international written opinion if the pathology is unusual, TP53 aberration or a complex karyotype is found, or the Swedish teams disagree; genetics questions go laboratory-to-laboratory through Uppsala and ERIC.
- If treatment becomes indicated, compare the Swedish options, including CLL18 at Lund, before any foreign trial (Treatment landscape).
- Travel in person mainly for high-risk or relapsed disease or trial access, planned with SUS and backed by a written shared-care agreement.
- After relapse on both drug classes, or in Richter transformation, weigh international trials and US CAR-T against Swedish trials and allogeneic transplant (Clinical trials; Richter transformation).
Avoid: treatment without an iwCLL indication outside a trial, wherever it is offered; paying abroad before the Swedish route has been tried; unregulated clinics.