.IIRIS Digitally Signed Document Doeuinent ID.. A053FAC71F12E6 Document Details tNP003-Charity accounts (final)-CS-20251218- 172546-752.PDF Filename: Client vf: James Andcrson & Co Signature Details Name: Jim Green Einail: Jim.Green@inpdrgal¢w2y.com Date & Time: 1911212025 10..23..12 AM (GMT) IP Address: 109.148.232.23 Sigving Stateinenl: l approve thcse aecounts on bchalf ofthe board. Digital Certificate The approved PDF file has been digitally certified.Please check tlie Digi11c I Certificate information in y0iiL- PDF I'iewer 10 verify the Dibyiial Certificole aiitheniicity and Ilie PDF has not beeji lanipeird with. On behalf of: Jamcs Anderson & Co PDF digital Certifieate: IRIS Software Group Limited Di2ital ccrtificAtI' issued h!,: Globalsign Please keep a copy of this document for your records.
REGISTERED COMPANY NUMBER.. 10646129 (England and Wales) REGISTERED CHARITY NUMBER= 1175311 INTERNATIONAL NIEMANN.PICK DISEASE REGISTRY IA COMPANY LIMITED BY GUARANTEEI Report ofthe Trustees and Flnanclal Ststements for th8 Year Ended 31 March 2025
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Contents of the Financlal Statements for the Year Ended 31 March 2025 Pag Ref8rgnce and Adminlstratlve Detalls Report of the TNstee5 2 to 10 Independ&nt Examlnerfs Report statoment of FÉnanclal Activiti8s 12 Balance Sh091 13 Noles to the Financlal Statemonts 14 to 19
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Relèrenco and Admlnlstrative Detalls for the Year Endèd 31 March 2025 Trusteos J E Green T HNvol Mrs T A Malhieson Dr A Dardis Dr M Vanier Company secretary Mrs T A Mathieson Registered officè Suite 2e North Sands BUSI58 Centre Lib8rty Way Sunderland Tyne and Weal SR6 OQA Reg18tered company number 10646129 (Eryland and Ws1è51 Reglster8d charlty numb8r 1175311 Independent examlner James Anderson & Co Chart8red Acctyjntsnts Pentland Estate Slrailon Edinburgh EH20 9Q Chref executiv8 officer Conan Donn811y Pag8 1
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY (REGISTERED NUMBER.. 106461291 Report oflhe Trust8es for thè Year Ended 31 March 2026 trustees who are alsD director5 01 the Charity for the purposes ol th8 Companies Act 2006, PT8sent their report with the financi81 statements of the thatily for the y88r ended 31 March 2025. The Irust8es have adop18d the provisions 01 Accounting and Reporting by Charitses." Statement of Recomtnended Practi applicable to charities preparing their accounts in accordan with the Financi81 Reporting Standard applicable in the UK and R8public of Ireland IFFiS 1021 18ffeclive 1 January 20191. Objectives and activltles Background The InlernatK>nal Miemann-Pk Disease Registry IINPDRI is an indep8ndent, nol-foi-profil charitable 0panY Isted in Ihe UK. Cre8t8d by a collaboration of patients, health professionals and medical researchers, il offers a sing, diseastrspeafic global gistry data resour that Indudes both dinical data and patnt reported data lor Acid sphing0mlinase DeficierKy IASMDI NiemaTrn-Pick dise85e, and Niernann-Pick disease type C. Due to its r8rity, registr8tion for Niemann-Pick diseases is particularly important. Registrab"on can prowde sufficient data to understand its ¢omp18x natural history, support aClerated reciuilment to trials and facilitate Ihe d8vebpment and monitDring of care StaardS. Mission, Vlsion and Principles The mission ol the INPOR L% to document the Niemann-Pick patient expeiience,. lo irnprove diaonos15, treatment and a, to advdncè rtsearch and ultimately. to improve health oulcnrne5 lor all those affected. Our vision is the CatIon and ongoing devebpment of a comprehensve. int8mational data resource. specific lo Niemann-Pick dis88ses which benefits pat1$ by in(xeasiro understanding of these rare condits"ons, encourages ettiuent aTKI timely diagnosis, 8n8bS piogiess in research and dinical trials. and facilitates the developrn6nt of therapeutic interventions. INPDR advancès our ViSK)n by adhering to the following prinCieS. o W8 iespect arKI ptote¢l pa118nt privacy, 8nd build trust among our pati8nl community. o We strive for excgll&nce through eontinuous Ynprovernent. piofessh)n81ism and expgrt 8UPPOrt. o We operate to high8St levels ol s(i6ntifi¢ int89rity and promote high-quality research. o We are transparent in communicatiS take respon5ibilty for our actions and deagons. o W8 foster an environment of collaboration to improve outcomes in Niemann-Pick diseases. o We embffdce innov8tion and change as appropriate to our n8eds. We shall ietnain independenl of 8dvocacy, policy and commercial interests and let data tell the story ol Niemann-Pi¢rt diseases. A key strerolh of lh6 INPDR is the wlaborative rdationships developed from the outset and enabling the powerful combination ol patient leadership and piof6ssional implemenl81ion. This ensuras the bgitimacy of th8 patpnl perspedive and ensur8s that il Is 8t the fart of ourorganisation and mission. Page 2
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY (REGISTERED NUMBER.. 106461291 Report ofth8 Trustees for the Year Ended 31 March 2025 The INPDR will work to enhance and laclSrtalg prO9SS through the following aims and objetlives.. Alms o To build a high quality, cOMpte Inlemational populatv)n-based Nierllann-Pk Dease Registry o Protect patient privacy arTrd ensure MplIanCe with data protection and the highest dinical stsndards o To facilitate clinical research through dala sharing and provision ol analytical sewices o Provide eVKIen to faeilitat8 advocaDJ and inform public debate Oble¢tives o To de5crib& tr epK18mioicK)y and natur81 history ofASMD Nbm8nn-Pid( disease and Niem8nn-Pidr Type C o To support development o15tand8rds ol diagrTrosis. clinical management and qu81ily ol ca o To establish genotype-phenotype correlats.ons o To Pfovide support for equal access to biochemical and g8netic testing o To facililale a¢celeraled r8cruilmenl lo intetV8nlional studigs o To prode a regulatory compliant registry to salisfy p05t-marketirKJ obligats'or o To 5UPPOrt regulztory interaction betW8en natM)nallsuiKanational medi¢ines agencie5 and pharrnac8Utical compan5 o To accelerate progi&ss in undetstanding NPD, by encouraging educalion DI health professionals and researchers The INPDR developerj arKI maintsins a rUlatOry-¢oMpl1ant, secure dat8b8se of consenting patien15, Wlth approprte se¢urily, management, and controls. A Secu web-b8sed electronic d8ta capture IEDCI plalloim is used for the systematic arKI unifom collection of clini¢al data, p8tient-reported data and cAregiver-reported data ol patients diagnosed wth either ACKI Sphlngomyelinase Deficiency IASMDI or Niernann-Pi¢k Type C INPCI. The 8clive parbcipalion of clinicians, patients and caregivers from around the world f8cilitales the collection ol detnographio informatn, d18gnoslic results, treatment, atKI health outcomes data. The INPDR is a k)ng-lerm in4"atIve that wll conl'nue to glow arn to create methanpsms to ensure that the data Collecleil wod(s hard6St to serve patient needs. Signlfl¢anl actTrvltles In the last year we worked to continue improving INPDR'S impad by increasing global ¢rUItM8nl. supporting data collection. enhanong data quality activities and fallting and supporting meaningfijl research. All activities undertaken in the reporting p8ri0d moveil the charity foNard in its mission to advan r8search and impiove heamh oirtcomes in Niemann-Pick (Sis8ases. Cllnical Data Collection 24 medical contw were Included in the Clinicpn Reported Database ICRDI lo collect clinical data frorn 488 patients in 2024125, consisting 01120 palients with ASMD and 368 with NPCI. As well as maintainin9 collabofab.ons with ntr8S in North America, Soutth Arnera and Europe, new centres in Ihe Middl8 Easl and Br8ziI initiated data collection. 46 new sites have been £ppio8ched lo collaboiate. with di5CUSsions in progre88. Patient Reported Data The Patient Reported Database IPRDI had 8 total of 158 patnts and r8regwers enrolled in thp 2024125 pariod. Questionnair8 responses were sought trom p8rticipant5. with 83 quality of Pilè surveys and 101 symptom. severity and unmet need assessment r8turns obtained. Behveon Dec8mber 2024 and March 2025. direct promotion of the PRD w8S pau58d to supwrt a UK patient organisalion rese8rch inilialive, a comprehensiv6 Patient and car8giver surv8y Isee 'Rèal Wortd EXpernCe ol NEmann-Pick disease Type C Patients and cagiVe[s, below). The decision wa5 made to encour8ge participation in the research initiative. The survey pmject supported the PRD by co118ting contact details ol pattiupanls who w8re Inte$ted in joining the PRO. The PRD i% currently in English. but 8 multi-18nguage solution is in development for 2025. Dats quality monitoring was strengtfEned in the US and UK. supported by the Ara Pars8ghi8n Medical Research Fund, with vi&ts to clinical sile5 to ensure data accuracy. INPDR also achieved Is0)1 8c(Thdilalion foi Qu81ty Management Systems. eonfirmiw 115 strong registry aThY researth support capabilities. Page 3
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY IREGISTERED NUMBER= 106461291 Report of the Trustees lor the Year Ended 31 March 2025 Oble¢tlves and actlvltlos Anonymised InfoTmallon sharlng To meet the a of laalilating dinlcal research through data shallng, INPDR has worked with researcr$ to submit requests lor anonymised registry data. Intemational applicants of differing areas of 8xpertige and backgrounds have proposEd research piojeds which explo differing aspects of Niemann-Pick, includiThJ diseas8 mechanism5, movement disorders. tIent and caregivei reported expeln$. and disease management and progression. Publications, Reports and Posters INPDR was involved in reports and publications induding, a 2024 publication in Orphanet Joumal of RaE Diseases that exploi8d the rea1-life impa¢ts of olipudase alla on ASMD pat15 their famils. Continuing work previously undertaken, INPDR published a second quanlilalive and qualitative report on the impact of olipudase alfa on adults with ASMD. wth contributions from the INPDA. NNPOF aThJ NPUK. INPDR also produd and Contributed to sever81 conference presentations, including at the annual WORLD Symposium in Febru3ry 2025, where thre8 P05ter abslr8Cts were acc8pl8d and presented. Additionally. pr85entations were dglivered to multipkg patient cornmunily meetings in Europe, North America and Australia to disserninate research finding5 8nd proVe audien updates of INPDR progr8S8. Public bet)efSt In shaping our obi'eclives for the year and planning our activities. the trustees have [X>nSered th8 Charity Commission'5 guidan on public benefit, including the guidanc8'publL benefit.. running a charity IPB21'. Achlevement5 and perfomiancè Charltable actlvltl85 Funding in the form of unrestricted eduratlonal grants from Industry stakeholders enabled the charity to carry oul its activities. Ill 8ddith)n, INPDR reiVed reimbursement for the Servi it prowded to the INPDR Galeway.. Further lunding came from the Ara Par5eghian Medical Rèsearch Fund the National Lottery Comn)unity Fund. We have continued to maintain a strong presence in the field of research and hav8 collaborated on a global b8sis wth olh8r iart disease organisations, reseèreh and academic institutions, regulators. and industry to progress and further develop the registry, and to facilitate re58arth and clinical devdopmenl. We conlinue lo sustain appropriat& relationship5 wlh the pham)aceulic81 industry. particularly those engaged in clini¢a programmes and aclNities in the field of Niernann-Pi¢k diseas85 and to work c105ely with the glob81 patient advocacy leaders supportir¥J the Niem8nn-Pick community. This Includ88 the International Niemann-Pi¢k Di5885e Alliance. whose represenlatwes ale appointed to th@ INPDR Board of Tiuslees and Scientific Advisory Committee. We conb.nued to Wlth the global Niemann-Pick community through virtual and in-pEr50n confeientss and focus groups. Pa98 4
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY IREGisfERED NUMBER.. 106461291 Report of tho Trustees for the Year Ended 31 March 2025 Achievement5 and performance Durlng the 2024125 reporting peri1. we have worked to Stngthen INPDR'S impact and foster positi progress in NÈm8nn-Pick research through the following achievements and performance.. -The number of participating clinieal siies increased to 24 across EuroFe, North Arnerica and South America. Through INPDR'S Collaboration with tfEsts sites, 488 patient rec(Kds were co1cted sin(x the laUh of th8 CRD. formed of 120 ASMD and 368 NPC rewrds. - 46 new dinical siles from across the globe, including Eurote, North Atnerica. Soulh America. Australia, ASH and Afllca engaged with INPDR to initiate a collaborstion lo collect patient records. Thi5 laid the foundation foi Signifant expansion ol the INPDR'S footprint. enabling iepiesenlation frotn r8gions undersèrwerj by clinical research opportunities. The Patient Reported Database gW to include 158 patients and CagIve[s. with an a¢ptable numlEr of questionnaire and survey responses obt8ined. A temporary hall on PRD promotion was imposed between December 2024 and March 2025 to support a p8tient organisalK)n research inrtialive. which may have impacted on ¢rUitment rates 3rKI sutvey responsès. A5 th8 research Initiative was desvJned to collect contact details of pariicipants interested in the PRD. we 3ntlUP8te this will result in fuluie PRD partitipanl iecruilrnenl. il& th8 PRD is currently available in Eng115h language, wotk has progressed 5ignific8nWy wth technology partn8r. OpenApp, to develop a mu4.ple-raTrYUage solution with the exp8clalion that this will be rolled out in 2026. A key uale lo the PRD was the introduction of lunclionallty allowing caregiver participants to indicate their lov or have pgssed away Sin enrolment. This ends the caregiverfs study partiapation and prevents potanlially distressing ernails requesting new surfftys lo be completed from LEing 58nt to the Ca91ver. During the reporting period, INPDR'S Clinical Research Associates ICRAI undert(M)k several vists of CRD clinical siles to undertak8 data quality exercises. thereby 5UPPOrting the accuracy and completeness of collected data. These visits a150 provided an opportunity to maintain and str8nglhen relationships with personnel at the dinical siles and allows for fèedback and engagement from one ol INPDR'S key collaljorator s&clor. Addilion8lly. INPDR's CRA'S supportèd lh8 develOent of cor8 data quality prOSseS. with input from INPDR'S ChEf Operating Officer ICOOI. This induded refining key data quality pro$$ documentation, and th$ d8velopmgnt ol a comprehensive Key performan Indicator IKPII dashboard, created by our Health IT partner. The INPDR m8inlainecJ ils Is001 accreditatson for Qu81ity Management Systems by the British Standards Instilutè during this period lor all areas related lo dala collection and management This aCcditation defflonstrgtes the INPDR has robust System lor managing th8 registry and 5UPPOrting clinitsl research. Changgs to INPDR 5t8ffing occurred during 2024125. Two new staff membèts join8d INPDR.. a full-tim8 Chi81 Operating offi.r ICOOI, who support5 cole r8gistry oFÈrations and activities, and 8 part-time Cornrnunicalions Consultant who devek)ps and delwers INPDR'S communieatK)n approach to support the promotion of INPDR 8clivity and progress to the p8tient Community and stakehothrs. The Chief Executive Officer ICEOI resigned snd INPDR as of 28th February 2025 In the CEO'S absence. the COO, with the support of the Board of Trustees, has been maintaining business continuity. A replament CEO will be sought during 2026. To 5UPPOrt achieving the aim of facilitating rèsearch, INPDR havè 8UPPOrt several applications for anonytnised research data to facilitate resa3rch projects. These are 3ummarised below. Research Studles Sl Mary's Hospital M8nchester, UK, Oefining the seizure burden in Niemann Pick C." - Aston University, UK. Quality ol life (QOLI in patients with Niernann-pick Disease Type C INPCI and thair car8rs. University College London, Disease progSsIon in early and late infantile Niem8nn-Pick. University of Oxford. UK, The tnanifeslalions and m8nggement tsf inflammatory bowel d15ease in Niemann-Pid( disease type C INPCI patients." Univet5ily of Oxford, "Incorpoialion ofASIS into th8 INPDR lor NPC cases. H05pilal for Sick child. Toronto, Canada, "Phenomenology ol movement disorders in Nmann-PICk-O1Se&Se Type C INPCI.. Findings from the Inlemational NietrTrann-Pick-Disease Registry IINPDRI University ol Oxford, 3D-Modelling ol NPC1 mutations as 8 tool for disseetino disease mechanisms phenotypic h8tereneity Pag8 5
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY (REGISTERED NUMBER.. 1D6461291 Report ofthe Trustee8 forthe Year End&d 31 Mah 2025 A¢hlev8ments and p8rformance Gonfergnce Poster Presentations Development of a novel palient-reported outcome IPROI measure for acid sphingorny81ina5e delKiency according to the United States Food and Drug Adrninistralion IUSFDAI guidan INORLDSymposium 2025, San Di8go, United Slates ofAmerica A Multi-Di5aplinary collaborats.on to Investigate Potential Contexts ol Using SleepBased DHTS in Clinical Research Praclioe- WORLDSymposium 2025, San Diego, United St8te5 ofAmertca Inve51igaling the Real-workj ExpeiEnce of Patients wth Niemann-Pick Disea88 Type C INPCI and Thr Carers WORLDSymp05iurn 2025, San Diego, Unrted Statss ofAmerica Reports The impact ol treatment wrth olipudase alfa on adutt patients With ASMD - Part 2 Qualil8liv8 Report. Rare Disease Research Partners. Communlcatlon and engagement INPDR ¢rUIted a Communication Consultant to SUPPOrt the promotion and visibility ol the work undertaken by th chaiity Ihrough th8 development of a communication strategy and stakeholder engag8menl plan. This h85 alltywed INPDR to have a greater presen on sotlal media channels worldwide, alkymng communiCaonS to reach 8 0bal audien( Rellecling the international scope of w, INPDR psented re88ard) findirys arKI updates lo natK)nal and global confern$, induding patient CCAnfflunty meetings.. - Niemann-Pick UK. UK ~Vaincre Les Maladies Lysosomales, France - ASMO Espana, Segovia. Spain - WORLD (We're Qrganising Research on LysosoThal Oiseas&l Syrnposium, Florid8, USA Nalitsnal Niemann-Pick Disease Founclalion Conference, Florida. USA - Ara Parseghian R8S6arch Conference, Arizona, USA These ConfenceS not only provided an opportunity to showcase the work ol Ihe INPDR but also facilitsted direct engagement with palignt community mernbets and stakeholders working in Niemann-Pick diseases. This engagement, tum. increased INPDRS visibillty and •rfoTfn8nee in those Countr$. Flnancial review Flnancial posltlon Unr8Stricled income in the year hwJs £371,210 (£2024 £39,143) and unrèstricted 8XP8ndrtute was £273,031 12024 £183.2491. A restrict8d grant totalling £76,611 12024 £61,321) was award by the Universlly ol Notre D8, Ihroygh ils Ara Parseghian Medical Research Fund and Michael, Marcia, and Christa Parseghian Endowm6nt for Excellen{ in Niemann Pid¢ Type C Research. The fund received has en8bled the continuing develoynent of the Registry. Alongside the high level ol support and Interaction from the patienl and clinical wmmunities, demon$lra18S the potential of the Registry to make a posrtive d1ffefftn for the global Nmann-PIck patient community- Reserves pollcy There were free reserves of £11,387 on 31 March 202512024 -£7.4291 The board aim is to hold slx months running costs in reserve which would be £136.515. Further as the r8glslry activit$ glow a huher lev81 of reser will be required. Sustalnablllty & INPDR Gateway Ltd A sustainability plan h8s been introduced with lh8 aim ol diversifying income and provIng financial stability. This includes a commerci81 subscription m(Klel, a costs'ng model lor the rK)n-commercial s8Ctots plus a trust and corporate gr8nt 5tiategy. To support the commercial subscription, INPDR Gateway Ltrj was established. INPDR Gateway is a non-profit commerci81 eompany established lo support and facilitate appropriate engagement between the Inlemational Nlemann-Pick Disease Registry IINPDRI and industry partners. 51s primary purpose is lo provide a transparent, strudured, and compliant mechanism through which Industry can engage with registry-related activities. while protecting the independence, governance, and palIent-ntr&d mission ol the INPDR. Page 6
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY IREGISTERED NUMBER.. 106461291 Report of the Truste88 for the Year Ended 31 Mar¢h 2025 Flnancial review INPDR Gateway enables industry partners to collaborate with Ihe registry on activities such as feasibilrty assessments, data enquirie5. and research support. in a manner that is consistent th ethical, leg81. and data-proteclKin requir&ments By operating as a separate gaI enlity. the Gateway allow8 commercial interaclK)ns lo msnag8d appropriately, ensuring dear separation belweèn tharitaNe registry activit8 and commercigl58rvi$. Importantly. INPDR Gateway $ not compromise patient confidentiality or registry independence. All dats access is governed by robust policies, wth oversight from the INPDR g0veman structures, and no idenlifiabie patient data are shared without aFvropriate approvals and Con$t. Thiough this model, INPDR Gateway supports the long-lemi suslainalxlity of the registry, facilitates responsible industry èngagement, and helps accElerate research and therapy devoloynent for N1eMann-Pk dise88es, while maintaining Iiust with patEnls, famili85. aThY IfÈ wider community. This financial year. INPOR Ga18way ctsntribuled £370.000 1£20.000 in 20241 to INPDR in reimbursernenl for setwces provided, maintaining the INPDR and en8bling further development in line with priorits-es. Future plan5 The INPDR has established a Solid foundation to achieve its airn5 and obje¢tivos through Ihe development of its clinician-reported ancl pati8nt-reported databases which encompass88 ils registry system. ThrOah data collected within the iegiqtry systèm, high quality data can be 16ver8ged to enable impactful ¢linical ie58arch for Niemann-Pick diseases for the benefit of p8ti8nls and families globally Our priorFty loi the coming year 15 10 5tr8nglhen this foundatK)n further to increasa INPDR'S impa For 2025126, 8 strategic anil op8ralional plan ha5 been defined, definlng 8 roadmap ol work that will further enhance th8 utility of INPDR'S registry data. Core work streams Include.. 1. Research INPDR will pu[sL a number ol research opportunities. both intemally initiated 8nd in collaboration wth p8rtners, to generate new knovAedge in Niemann-Pick diseases. Wthile the primary focu5 will rernain on levBiaging registry data, INPDR will 8lso support research projects that initialty gen8rate data outside the iegistry system, with plans to integrate those external datasets Into INPDR'8 repository. 2. Global Development ofCRD and PRD Efforts will l(Kus on Incie85ing partEcipant recnjitrnent to both the Clinician Reported Database ICRDI and P8t18nt Reported Database IPRDI. For the CRD, enh8nixd support rnea5uie5 for dini¢al sites will developecl, and updates to the CRD IT system will be implemented to improve data utility. Materials will be produ{d lo help pab.ent community organisatson5 expand CRD partiapation in *h8ir local territorie5, fvrtherenabling patient and Caregiver involvement. Currentty, the PRD is available only in English. Work 15 scheduled to provide Ihe PRD in six langu8ges, enabli broader global partiopalion. Cornplementino this. a PRD User Experience review will be ojnducled to identify itnprovements that eTrhafi dats utility and redu barrErs lo partiapatiOTI. 3. Data Quality and Completènes INPDR will strength8n registry data quality by improving its centr81 data monitoring process to identify and correct data errors. A Key P8rforman Indicator IKPII system will Le developed and launched lo allow for rea14imè monitoring and view of CRD data. thereby enabling the tirnely intervention of data errors. ReguE8r data quality reports will be WodU biannually to proVe insights into data integrity. ongoi efforts will focu5 on improving data completeness anrl aceur&y through refining data points. SOU verification at clinical siles, and central data MltOrI @ffort. 4. Communication Materials lo enable clear and nTreaningful communication outputs for INPDR'S diverse 518keholder audierte will be produd. Central to this will be the development of a 2025126 Communication Plan and Strategy, which will define INPDR'S approach in engaging with its 5t3keholders. A schedule of rular updates across all workstre8ms wll be implemented, alongside targeled promotion of key outputs. INPDR will entIfy and attend major conferences and meetings lo disseminate findings within the global Niemann-Pid( communty and fosttrr cDllaboralions. Structure, governance and management Status and Govgmlng Document INPDR is 8 company limited by guarantee goveiried by ils Memorandum and Atbcles ol Association. The company h85 one member, the Internationsl Ni8mann-Pid( Disease Alliance. INPDR is èlso 91s(ele{l a5 a charity with tha Chaiity Cornmission. Page 7
INTERNATIONAL NIEMANN.PICK DISEASE REGISTRY IREGISTERED NUMgER.. 106461291 Report of the Trustses for the Yèar Ended 31 March 2025 struclure, governance and management Recruitment and appolntmenl ol n8w trustees Future Tiustees shall be appointed by the TIu5tees from lime to time lolk)wing a nomination received from th8 Nominations Committee. TIust8es are volunt88rs and each takes on responsibilrtie5 within the organisation to co-ordinatelsupport an aspect of its function. Inductlon and trdinirEg of newtrustees New Trustees are briefed on their legal obligstions, Ihe wntenls ol the memorandum & artides of 8ssocialion, th8 board and decision tnaking processes, the business an and the iecent finanaal p8rfOrMan ol the charity. During the inductic. Ihey are mentored by other Trustees. Oragnlsational Stru¢tur The Trustees ar8 d1CHY responsiblè for the effertiV8 govemance of th8 organisalion in accordan wlh stalutory guidance and legislation as provided by the Charity Commissioners and Companies House. The Trust8es tneet quarterly wrth additional contact as required, in order to r8view reports and to carry out management and financi81 reviews. Tiustees follow a code of conduct, which promdes dear guidelines as to the standards ol behaviour, responsibilit, and best practice expected of tho58 involved with Ihe INPDR. The Trustees delat@ th8 day-to-day management of th& oiganisation to lh8 Registry Manag8m8nt Team, by the Chief Executive Offir. who reports regularty to thtr 8oard al quarteily virtual meetings. Key management remuneratlon All trustees give of their time freely no trustee receiverl remun8ration in the year. The board is responsib for Setting Trployee s8lary Ve1$. All sal8ri8S S benchmarked wlh smilar roEe5 in the voluntary secior, not with th8 public or private sectors The size ol U)e organi5ation Is also Consid81. Wider nelwork The chgrity's tnember is the Int8fflatv)nal Niemarin-Pi¢k Dise83e Alliance IINPDAI which is an alliance of non-profit 5UPPOrt organisations who are assoated with the iare group of g8n81ic diseases known collectively as Nietn8nn-Pick Disèases. The Alliance provides a foium where. through the exch8tvJè of infomiatK>n. experien and knledge, global progress caD be aecelemted Page 8
INTERNATIONAL NIEMANN.PICK DISEASE REGISTRY (REGISTERED NUMBER.. 106461291 Reptsrt ofthe Trustees for the Year Ended 31 March 2025 Structure, governanc& and management Risk managom&nt As part of the Quality M8nagement Systern. which has IS09001 accr8dilalion, the INPDR rnaintains a risks and k8sues 109. Risks are tnanaged on an ongoing ba818 by the Registry Management Team al reviewed by Boarrl Members at a qU8rterly Management RevEw Meeting. The reglstry operates in 8 highly iegulated dinal research environment a1 must ansur8 Cornplian with data prolethon law and good dinical practi INPDR operates in Complian( with the European M&Sicine Agency IEbAAI Guidelines on the Managem8nl of ptnI Registli88 and Ihe regi51ry has received a tter of support Iiom EMA as a res(xJrce for dinical searCh. To manage rkS relat8d to data protection and ensure the privacy of registry participants, INPDR employs the servic6S of a consultant Data Protection offi(r. In addition, during the year, our teehnology partnei, Op8nApp was awarded IS027001 aecr8ditation for dats sscurty, providing further Confiden th8t the INPDR are wellylac8d lo ensu patient priv£ey. th r8g8rd to data protedion. there were tK) atherse even15, incKlents or breaches r8POrted during 2024125 no data su4.ect rights requests. Principal Rl$ks and Mitigatlon . INPDR The prinap81 rigks ants'¢ipated in the foreseeable future, logether with mitigating actions, include." Suslalnabillty and fundlng rlsk Risk." Limited and uncertain lontemi fundiw may affect the ongoing operal'on, maintenan. (levelopment of the regislry Mih"g8tion.' INPDR actively seeks diversifi8d funding sourcss. including grants. Partnerships, and collaborative prqects, and priorilises act1Vlties that maintain coi8 iegistry functionality and data quality. Patient enrolment and geographlc iepresentatlon Risk.. Insufticienl patient enroltn@nt or uneven getsJraphi¢ repRsentstK)n may limit the robu5tn&85. generalisability, and utility of registry data. Mitrgalion.. INPDR woik5 d0881y with Pat1 organisations, diniuans. and advocacy neorkS (including INPDA memb8rsl to encourage enrolrnent, raise awsren8ss of the registry, and support partpation acmss diverse 18gK)ns. Data quality, completen955. and conslstency Risk.. Variability in d8t8 entry, incomplet8 datasets, or inconsistent reFX)rting may redu the scientiric and clinal valua of registry outputs. Miligalion.. INPDR applies defined d8ta standards, prowd&8 gUVsan and training lo participakn'rYJ sites, and undertakes iegular data quality monrtoring and validation. - Data protection, privacy, and cybersecurlty Risk.. Brea¢h ol dats protection regulations or cybersecurity IneK18nts o)uld compmmi5e sensitive patlenl data and damag8 trust. Milig81ion.' INPDR operates in compliance wth relevant dsta protectk)n regulations linc1ing GDPRI, etnploys robust d8ta security measur8S, 2nd regularly ievi8w$ governance, consent prose$, and lechnul safe-uards. Dependence on cllnician and site engagement Risk". ReliaTTrce on dinician participation and site 8ng8gement may affect data subrnis510n rates and I0-terM suslainakn-lity- Mitigation.. INPDR mailltai 8Ctive engagemènt with dinical sites, demonstrates the value of registry participation through outputs and fdbad<. and seeks to reduce adminislrah.ve burden where p055ibkg. Regulatory and ethlcal ¢omplex¥ty Risk." Vaiiability in natlOn81 iegulalory and ethical requirements may slow site onboarding or limit participation in certain jurisdictions. Mitigation.. INPDR piovid8S SUPPOrt to sites navigsling loc81 approvals and adapts processe5 wh8re feasible io accommodate differing r8gvlalory en%4ronments Governance and operational ¢apa¢lt y Risk.. Limited operational capauty m8y constrain Fegistry development, 18spon5iveness io t8searo* requests, or expansion o15cope Mitigation.. INPDR maintains dear g0Veman structures, indudiru Board and Scientific Advisory Committee ov8rsight. and prloritises activities aligned with slr8legic objective8 available resources. Addltlonal Risks Con81dered Stskoholder allgnment and expectatlons Risk.. Differing expectations amorvJ patients, clinicians, rès6arth8rs. and industry Partners may eate thalleryes in prioritisalion afid data use. MitvJalion.' INPDR applies transparent governan processes, cP8ar data acc888 wli(#es, and Inclusive stakehokjer engagement lo align 8xpeclalions. Pag8 9
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY IREGISTEREO NUMBER.. 106461291 Report ol the Trustees for the Yèar Endad 31 March 2025 structure, goveman¢e and rnanagement Reputational risk Risk.. A5 a trusted sourcè of disease-speafic data. INPDR faS reputatK)nal risk related lo data use, partnership5, Dr peIVed conflicts ol inleie5t. Mitigation.. INPDR maintains independen, alieS rigorou5 VIeW of data aCsS iequ85ts, and ensures transparency in partnershps and comrnunications. Rectsgnising the contrlbutlon of volunleers We ale extremely grateful tts those who give their tin8 as volunteers in support of the INPDR. Wfithout their dedicated and conlinu8rS support, w8 would not be able to achieve all that is required on Lehall ol our orgAnisation and community Tris report has been prepared in aecordance with speci81 provisions of Part 15 of the C(mpanies Act 2006 lating lo srnall cornpanies. Approved by order ofthè board of trustEes on 19 D8C8rnLEr 2025 and Signed on its b8h81fby'. J E Gre8n - Truste8 Page 10
Independent Examlnerfs R8POrt lo the Trustees of International Nlemann-Pick Dlsease Reglstry Independent examln&Vs report lo the trustee5 of International NiemanTt-Plck Dlsgase R8glstry I'the Company'l l pOrt to the charity trustees on my examination ol the accounts of the Company for Ihe year ended 31 March 2025. Responsibilities and ba515 of report As the chgrity's tiustees ol the Comp8ny land also its directors for the purposes of company lawl you a responsible lor the preparation of the a¢¢ounts in 8ccordance with th8 requirements of the Gompanies Act 2CO61'the 20Qb Act'i. Having satisfied myself that t1 8ccounts of the Company aitr not required to be audited Uer Part 16 of the 2CQ6 Act and are eligible for independent examination, I report In respect of my examination of your charity's accounts as cairied out utKJer SectDn 145 of the Charities Act 2011 I'the 2011 Acl'l In ¢arryitvJ out my examinatK)n I have fdbwed the DeCtionS given by th& Charity Commission under sects.on 145151 Ibl ol the 2011 Act. Independent examinerfs statement sin your charity's gross incorne exeded £250.000 your exatnin8r must be a [nErnr of a listed body. I can confirm that l am qualified to undertake the examination because l am a member of the Insb'tute ol Charteied Acwuntants of Scolland, whi¢h rs ofthe listed bodies. I have completed my examination. I confirm that no matters have corne to my attention in nnectIon with Ihe exarrinalion giving rne cause to be[E.. accounlirTrg r9cords wer8 not kept in resped of the Company a5 required by Section 38e olthe 21K)6 Act,. or the ac¢ounts do not 8ccord with those records., or the accounts do nol comply with th8 awounting fftquirernents ol Section 396 01 the 20ffi Act olher than sny requirement that the accoun15 give a twe and fair view which is not a matter considered as part of independent examination,. or the sccounts have not been Prepad in accordance with th8 rnethods and principles ol the St&t8ment ol Recommended Practice for 8ccounting and pOrting by charities (applicab lo charities prep8ring their ccounls in accordan with the Finan1 Reporting Standsrd 8pplicale In the UK and Republic of Ir8land IFRS 10211. I hav8 no cOnrnS and have come across no other matter5 in connection with the examination to which attention Shk1 be drawn in this report in order to enabl8 a proper understanding of the aeeounts to be reached. Christopher T Spalding The Institute of Chartered A¢count8nts ol Scotland Jatnes Anderson & Co Charteied A¢counlants Pen118nd Eslale strailon Edinburgh EH20 9QH 19 Dember 2025 Page11
IprrERNATIONAL NIEMANN-PICK DISEASE REGISTRY St4tement of Finanelal Activititrs Ilncorporating Income and Exptrndlture Accounti for the Year Ended 31 Mar¢h 2025 2025 Total funds 2024 Total funds Unrestrlcted rund Restrlcted fund5 Note$ Incomo and endowmonts from Donations and legacies 78,611 76,611 .875 Charitable aetlvitles Chaiitable activities 371,210 371.210 38,623 Total 371.210 76.611 447,821 131.498 Expendlturb on Charltable activities Ch8ritÉble aciivi118S 273,031 95,427 366,458 307,686 NET INCOMEIIEXPENDITUREI 98,179 116,8161 79.363 1176,1881 Reeonclllatlon of funds Total funds brought fopNard 17,4291 18,816 11,387 187,575 Total funds carrled fotward .750 ,750 11.387 The note5 form part of these financial statements Page 12
INTERNATIONAL NIEMANN-PICK OISEASE REGISTRY (REGISTERED NUMBER.. 106461291 Balance She8t 31 March 2025 2025 2024 Notes Flx&d as8et8 Investments Current assets Debtors Cash at bank 10 56,111 68,007 22 25,363 124.118 25,385 Crèditors Amoun15 falling due within one year 133,3691 113,9991 Net currant as8ets ,749 11,386 Total a$$ets less current Ilabllltlgs 90,750 11,387 NET ASSETS 90,750 11,387 Funds Unrestri¢leLI funds Restricted funds 13 90,750 17.42gi 16.81e Total funds ,750 11,387 Th8 charitable company is enlitled to exemption from a11 undèr S8cbon 477 01 tr Companies Act 2W6 lor the year ended 31 Maich 2025 The metnbers have not wuired company to obtaln an audit ol its fin8n(ial statements for the year ended 31 Maich 2025 in aordance with Section 476 01 the Companies Act 2LK6. The trustees acknowledge their responsibilities for ensuring that the charitable company keeps accountirrfJ records that cornpty with Secb'ons 388 and 387 of the Companies Act 2006 and preparing financial slalemenls which give a true and fair view of the state ol affairs of the charitable cofflpany as al the end of each finanaal year and ol its surplus 01 defi¢it for each finallal year in accordance wlh the reqLJirernenls ol Sections 394 and 395 and which oth@rwise Comply with the requirernents ol the Cornpanies Act 2006 relating lo financial statements, so lar as applicab lo the charitable cornpany. Thé89 financial statements have been prepared in accordan with the wovisions applicablè to tharitable companies subject to the small comp8nies regime. Ibl The finanual st8temenls were approv8d by the Board of Trustees afKI aulhorised lor issue on 19 December 2025 and were sKJnEd on its behalf by.. J E G18en- Trustee The notes fom part of these finarla1 5taternents Page13
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Notes to the Flnancial Statements for the Year Ended 31 March 2025 Accountlng pollcles Basls of pr8parlng the flnanclal ststements The finanual statements of th8 charitable cornpany, which is a public benefit entity under FRS 102, have been prepar8d in awoidance with the Charities SORP IFRS 1021 'Accountin9 and Reporting by Charilies". Slatemenl ol Recommended Practits applicab to d)arilie5 preparing t1r accounts in accordan with the Financial Reporting Standard applicable in UK and Republic of Ireland IFRS 1021 leffectiV8 1 January 20191,, Financial Reporting Standard 102 'Th8 Financial Reporting Standard applicable in the UK and Republic ol Ireland, and th8 Companies Act 2006. The finanaal statements have been prepared undei the hisloiical cost Convention. wrth the extptIOn ol investments whKh are induded al market value. Inlemational NIemanPick Disease Registry meets the definition of a public benerrt entity undgr FRS 102. In¢omè All income is recognised oncè tt)e charity has entitlement to the incorne, there is sufficient rtaInty of 1pt and SD 11 is probab that the income will be received, and thè amount of income receivable can be me85ured reliabty. Donation5 and grants are reeognised whell they have been communlcated in writinu with notification of both th8 arnount and seluemenl dale. In the ev8nt that a donatK)n or oranl subject to conditions that require a level of p&rforman b8fore the charity 15 entitled to the funds. the income is doferred and not recognised until either those conditions are fijlly met, or the fulfjlmenl of those condilions is wtK)Ily within the ¢ontrd of the chaiity ar rt is probab that tho58 conditions will be fulfilled in the reporting period. Expenditure Expenditure is reglS8d as soon as tre is a legal or constructive obliqation (x)mmith'ng the eharity lo thal 8xpendilure, it 15 probable that a trnnsfer of economio b8nefits will b8 18quired in settlement and the amount of Ihe ligatIon can be measured rdiably. All 8rltUre is accounted for on an a¢crua15 basis. All expenses, including support costs and goveman costs. are allocated or apportioned lo the applicable expenditure headings in the Statement ol financial activities. ExpenditurÉ on charitable activities inrjudes any VAT which cannot be cOvered and is reported as part ol th8 8xpendilur8 to which rt relates and Compiises those costs incurred by the charity in the delivery of its actiwlies and servi$ for its benefia&s. 11 includes both Costs that can be allocated directly to such a¢liviti88 atKJ those costs ol an iThlirect nature necessary to support them. Taxation The thaiity Is exempl frotn corporalkjn tax on its charitable activities. Fund accountlng Unreslricled funds can be used in ac¢ordan(x with the charitable objectives atthe discretion of the truste9S. Restrieted funds can only be us8d for particular restricted purposes wthin the objects of th8 charty. Resttithons arise wlKn specified by (k)noror when funds are raisgj lor p8rticular reslrir18d purposes. Further exanatiOn of the nature and purpose oleach fund Is included in the notes to the financial ststements. Pension costs The wmpany operates a defined contribution scheme, the 8ssets ol which are held s&patately from those ol the ¢harity.The pension eost d)arg8 tepresenl$ contributions p8yabk by the chanty to the scheme. Investments The investfflent in the group undertaking 1$ measured at cost less Impairm&nt on the basis trat it repre58nts shares in all enl'ty that is not publKly tr8ded and the falr value cannot otherwise b8 measured re11abty. Debtors and credltots r8celvable I payable within one year Debtors and creditors wlh no stated interest rate and ieceivable or payable within one year are rOrded al transaction price Any losses arising from impaimienl are r8cognised in 8xpenditure. Cash In bank and In hand Cash at bank and cash in hand includes cash and short term highly liquid investments. Pag8 14 continued.
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Notes to the Flnanclal Statèments - continued forthe Year Ended 31 March 2025 Accounting pollciès - contlnued Goln9 ¢onterA The finall81 slalements have been prepared on a going conrn bask 85 the trustees believe that no material uncertainties exisL Th8 Iruste&s have considered the level ol fund5 h8ld and the expected vd ol incorne and expenditure for 12 months from aulhorising these financ4al statements. The budgeted income and expenditure is sufficient with the level of reserv8s for the charty to be able to contlnue 8$ a going concern. Donatlons and legacies 2025 Total fut)ds 2024 Total funds Unrestrlcted funds Restrlctpd futTrds Donalk)ns Grants 520 92,355 78,611 76,611 76,611 76,611 92,875 Grants reived. included in the above, are as ft)Ilows.' 202$ 2024 Sanoli G8nzyme Universty of Notre Dame Lac National Lottery Cornmunity Fund 11,534 61,321 19,500 76,611 76.611 92,355 Income from charitable actlvities 2025 2024 A¢tlvity Charitable activrtSes Contribution to Re58ah Recharge lo INPDR Gateway Ltd Third party reimbursement 18,459 Charitable aclivib'es Charitable activities 370,000 1,210 20,OCX) 164 371,210 38.623 Charitable actlvllles costs Dlrect Costs (see note Sl charbI8 activities 368,458 Pag& 15 conb'nued...
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Note5 to the Flnancial Statements - contlnued for the Year Ended 31 March 2025 Dlrecl costs of charltabl8 aetivltles 2025 2024 St8ff costs Sundrifjs Equipment costs Registry hosting Travel & meetings Website costs Olher staff costs Office 8xpen5es Promotional expenses Executive meetings Iridependent examin6¢s fee Other reguiqtory ¢05ts Consultancy Research HIC m91nt8nan & supFM)rt Patient Facing Acts-vities INPDR GatwaY 171,022 129,563 1,860 48,663 21,349 1.295 1.947 9.011 21,740 29,722 1,027 9,520 5,826 2,424 1,974 3,713 71.669 20,068 10,440 3,413 1,512 75,840 10,749 11.520 5,643 23 368.458 307,686 TTU5tègs' remuneration and benefi18 There were no tru5tees' remuneration or other benefits for the period ended 31 March 202512024- nil) Trustees. expenses Duriro the period one trustee was reimburs8d £14012024 £5831 lor travel exp8nses.12024- 11 Staff costs 202$ 2024 Wages and salaries Soual security costs other pension costs 159.320 9,022 121,223 5,993 2,347 171,022 129,563 The average monthty numberolemployèès during the yearwas as follows.. 2025 2024 CcM)rdin8b"on and adminislr8tion Registry M8n4er The Chief Execubve Offir is key management and his total employee tEnefits (including Nl and Pension) were £60,465.12024 £65.4551 Page 16 continued...
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Notes to the Flnancial Statements. Contlnued for the Year Ended 31 March 2025 Comparatives for the statement of flnancial actlvltles Unrestrlct•d fund Restrlcted funds Total funds Incomè and gndowments from Donations and legacEs 520 92,355 92,875 Charitable actlvltles Charitable adivilies 38,623 38.623 Total 39,143 92,355 131.498 Expenditure on Charltable actlvltles Charitable actimlies 183,249 124,437 307,686 NET INCOMEIIEXPENDITUREI 1144,1061 132,0821 1176.1881 Reconciliation of fund5 Total funds brought forward 136,677 50,898 187,575 Total funds carried forward 17,42gi 18,816 11,387 Fixed asset InvlMnts Shgras In group undertakings Market value At 1 April 2024 arKJ 31 March 2025 Net book value At 31 March 2025 At 31 March 2024 Th8r8 were no investmènt assets outside the UK. The companvs inv851ments at the balanc8 sheet dale in the shale capital ol ccthpènie5 include the following.. INPDR Gateway Ltd Registe offi. United Kingdom 1270631 Nature of business.. Data WOVKler for research Class of Share.. holdlng loo 2026 2024 Aggregate capital and r858rves Profitlllossl for Ihe ye8r 142.2471 6.563 149.4461 152.1601 P8ge 17 continued...
INTERNATIONAL NIEMANN-PICK DISEASE REGISTRY Notes to the Flnancl81 Statements- contlnued for the Y•ar Ended 31 March 2025 10. Debtors- amounts falling due withln one year 2025 2024 Trade debtors Prepayments 55,(MX) 22 56.111 22 11. cdItorS. amounts fallln9 due within one year 2025 2024 Sccial Security and other taxes Accruals and deferred incThne 2.421 30,948 2.854 11,145 33,369 13.999 12. Analysis tsf neta$$ets between funds 2025 Total funds 2024 Total funds Unrestrleted fund Re8tricled funds Investments Current assets 124,118 133.3691 124,118 133,3691 25,385 113.9991 90,750 90,750 11,387 13. Movement In funds Net mov8m•nt In fund5 At 3113125 At 114124 Unre$trlcted funds Geneffdl fvnd 17,4291 98.179 gJ,750 Reslrtcted funds APMRF National Lottery Community Fund $34 18,282 15341 118,2821 18,816 118,8161 TOTAL FUNDS 11,387 79,363 90,750 Net movemgnl in funds. induded in thè atrrt)ve are as follow5.' Incoming rgsources Resources expended Movement in lund5 Unrestrfcted funds General fund 371,210 1273,0311 98,179 Re5trleted funds APMRF National Lottery Communily Fund 76.611 177.1451 118,2821 15341 118,2821 76,611 195,4271 118.8161 TOTAL FUNDS 447.821 1368,4581 79.363 Page 18 continued...
INTERNATIONAL NIEMANN.PICK DISEASE REGISTRY NDte5 to the Flnanclal Statfrments- contlnued for the Year Ended 31 March 2025 13. Movement In funds - Contlnued Comparatlves for mov8mont In funds Net mov$m8nt in fund8 At 3113124 A¢ 114123 Unrestricted funds Genera1 fund 136,677 1144,1061 17.4291 Restricted funds APMRF Nation21 Lottery Cotnrnunity Fund 50,898 150,3641 18,282 534 18,282 50,898 132,0821 18,816 TOTAL FUNDS 187,575 1176.1881 11.387 Comparative nel movemènt in furKls, included in thè above are as follows.. Incomlng resources Re$ources expended Movement In fund8 Unre$trlcttd funds G8neial fur 39.143 1183,2491 1144,1061 Restrlcted fund APMRF Sanofi National Lottery Community FurKI 61.321 11,534 19,500 1111,6851 111.5341 11,2181 I.364) 18,282 92,355 1124,4371 132,0821 TOTAL FUNDS 131.498 1307,6861 1178,1881 The general fund 15 fre8 to use in accordan[ with the objects olth6 Charity. The APMRF fund is to aClerate progr6s5 by fa¢ilitatiw regFS1ry recruilmenl in the USA. Th8 S8nofi fund was towards the INPDR 2023 Forum National Lottery Cotnmunily Fund is for telli the Story ol Niemann-Pi(Jt Diseases in UK 14. Related paity dl$¢losures The Inteinalional Niemann-Pick Oisease Allian IINPDAI is the only member ol the cotnpany During the year costs were ch8rged by INPDA to INPDR of £Nil 12024 £3,014). INPDA p8id shared costs of £4.991 12024 £4,422). Al 31 March 2025 there wa5 a balan due to INPDA of £Nil 12024 £Nill. Niemann-Pick UK INPUKI Is a member of the INPDR. During the year there weie r8charges lor shared Staff. travel and overtE3ds etc by NPUK to INPDR of £40,047 12024 £27,142). INPDR eived income in the year from NPUK ol £NIl 12024 - £7.9811. At 31 Msrch 2025 there was a balance du8 to NPUK of £3,560 12024 £2,650). The INPDR (R15tryI fully owns a CMpaNy, INPDR G3teway Ltd (Gateway), whith carries out the commercial opeialions of the R15try. Djring the year 8 sum of £Nil12024 £Nill was lent by the Registry lo the Galewsy. In addition recharges and Servi charge5 were made lo the Gateway iii the year of £370,(K)0 12024 £20.7611. A sum of £55,[0 was due from the Registry at 31 Mar¢h 202512024 du8 to £221. Page 19