CTF-ENDORSED NF CLINICS: PRINCIPLES OF OPERATION

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1 Pilt Guidelines 2006 CTF-ENDORSED NF CLINICS: PRINCIPLES OF OPERATION Backgrund Children s Tumr Fundatin supprts research directed tward finding treatments fr neurfibrmatsis (NF) as well as effrts fcused n imprving care fr thse with NF. The Fundatin is establishing a prgram t endrse NF Clinics natinwide. CTFendrsed NF Clinics will be thse that prvide utstanding medical care t individuals with NF, using best practices guidelines fr NF clinical care. By implementing this prgram, the Fundatin is prmting the highest level f NF care. The Fundatin will cntinue t ffer cntact infrmatin n all NF Clinics that request this, but will indicate t ur cnstituents thse Clinics that are Fundatin-endrsed. The Fundatin s gal is that these Guidelines will cntribute twards an evlving standard f care; and that all NF Clinics will meet the CTF guidelines and, in time, becme CTF-endrsed NF Clinics. These Guidelines will be shared as widely as pssible with the NF Clinic cmmunity and will be publicly available at Why might yur NF Clinic wish t seek CTF endrsement? Participatin in this effrt is anticipated t ffer a number f benefits. These include: 1. Opprtunity t becme a clleague in launching the first prgram t establish and imprve standardized guidelines fr NF care. 2. Eligibility t apply fr NF Clinic Crdinatr Financial Supprt frm the Fundatin: This is described in mre detail in the attached dcument NF Clinic Crdinatr: Descriptin f Purpse ) 2. Prvides the benefits f partnerships via an NF Clinic netwrk: The Fundatin will prmte interactin and cllabratin between CTF-endrsed NF Clinics including sharing f resurces and infrmatin, t help further strengthen NF Clinics. 3. Opprtunity t refine & shape NF Clinic Guidelines: CTF-endrsed NF Clinics will have the pprtunity t cmment n and help refine and cntribute t the develpment f best care practices. 4. Ptentially increased patient numbers: Frm prmtin f yur Clinic by the Fundatin, and via interactin with ther NF Clinics.

2 Pilt Guidelines 2006 What is an NF Clinic? An NF Clinic is an rganizatinal structure within a medical facility that is designated t prvide medical care and supprt t patients and families affected by NF. The NF Clinic shuld meet regularly t prvide a frum fr physicians, clinic staff and external supprt grups in which NF patients and their families are the primary fcus. What is a CTF-endrsed NF Clinic? A CTF-endrsed NF Clinic is ne that is recgnized by the Fundatin as being knwledgeable abut NF and cmmitted t the implementatin f best practices fr NF care and clinical management. Only CTF-endrsed NF Clinics will be eligible t apply fr financial supprt thrugh the CTF Clinic Crdinatr prgram (see separate attachment: NF Clinic Crdinatr: Descriptin f Purpse ) r t access the additinal partnering benefits f the NF Clinic netwrk. What are the Principles f a CTF-endrsed NF Clinic? The Principles are fcused n prviding accessibility and expertise in NF care. They define the set f services available t every individual with NF wh accesses a CTFendrsed NF Clinic. They als define the nging cmmitment f the NF Clinic t prviding the highest level f care t patients, and t partnership and netwrking with ther CTF-endrsed NF Clinics t wrk tward cntinually ptimizing this care. The CTF-endrsed NF Clinic: 1. Will accept patients with r at risk fr the disrders NF1, NF2 r schwannmatsis. 2. Will accept patients f any age, whether adults r children. Thse clinics that fcus nly n either pediatric r adult care must demnstrate access t cntinuity f care acrss age grups and facilitate the prvisin f care regardless f age. 3. Shuld have dcumented experience in NF care, including a Directr wh has demnstrated a cmmitment t implement best practices in NF clinical care. 4. Shuld be respnsive t patient queries. The Clinic Crdinatr r ther prfessinal staff member shuld be able t respnd t a patient s query within tw wrking days. 5. Shuld schedule new patient appintments in a timely manner in accrdance with medical needs. 6. Shuld apprpriately refer (either within r utside the Clinic facility) t the fllwing specialists wh are familiar and experienced with best practices in the care f adult and pediatric care f individuals with NF: Genetics Neurlgy Orthpedics Develpmental pediatrics/learning disabilities

3 Pilt Guidelines 2006 Ophthalmlgy Neursurgery Plastic surgery Neurnclgy Medical Onclgy/Radiatin Onclgy Endcrinlgy Audilgy/ENT Radilgy/Neurradilgy General Surgery/Surgical Onclgy Dermatlgy Cardivascular Disease 7. Will functin as an integral part f the clinic r hspital f which it is a part. 8. Shuld have knwledge f clinical research and prvide infrmatin n and facilitate the patient s participatin in nging clinical trials. 9. Shuld enter patient data that has been cllected by cnsent/assent int a database/nf patient registry, with apprpriate prtectin f patient cnfidentiality. CTF-endrsed NF Clinics will als be prvided with the required sftware fr entering data int the CTF-endrsed central clinical database. While entry f data int this database is nt mandatry it will be strngly encuraged. Clinics that enter patients int the CTF database will have the benefit f access t reprts and data frm the database and the pprtunity t utilize this data. 10. Must cmplete an Annual Reprt t CTF n Clinic activities. These measures will be used t imprve patient care. 11. Must agree t distribute annymus CTF patient satisfactin surveys (t be returned t CTF) t clinic patients. 12. Shuld make patients aware f lcal CTF Chapter cntacts/supprt netwrk and ther resurces in the cmmunity fr affected children r family members.

4 Pilt Guidelines 2006 CTF CLINIC COORDINATOR: DESCRIPTION OF PURPOSE Backgrund Children s Tumr Fundatin supprts research directed tward finding treatments fr neurfibrmatsis (NF) as well as effrts fcused n imprving care fr thse with NF. The Fundatin is establishing a prgram t endrse NF Clinics natinwide. CTFendrsed NF Clinics will be thse that prvide utstanding medical care t individuals with NF, using best practices guidelines fr NF clinical care. By implementing this prgram, the Fundatin is prmting the highest level f NF care. The Fundatin will cntinue t ffer cntact infrmatin n all NF Clinics that request this, but will indicate t ur cnstituents thse Clinics that are Fundatin-endrsed. The Fundatin s gal is that these Guidelines will cntribute twards an evlving standard f care; and that all NF Clinics will meet the CTF guidelines and, in time, becme CTF-endrsed NF Clinics. Fr full infrmatin please refer t the attached dcument CTF-endrsed NF Clinics: Principles f Operatin. CTF-endrsed NF Clinics will be eligible t apply t the Fundatin fr financial supprt f a CTF Clinic Crdinatr. What defines a CTF Clinic Crdinatr? The CTF Clinic Crdinatr will be the first and mst cnsistent prfessinal pint f cntact fr patients attending a CTF-endrsed NF Clinic. The CTF Clinic Crdinatr can be either a full- r part-time prfessinal psitin, but if part-time, the crdinatr shuld be accessible t patients, dctrs and clinic staff. The qualificatins required fr the psitin f CTF Clinic Crdinatr may vary depending n the specific demands and needs f the clinic and the system in which it perates. It is anticipated that CTF Clinic Crdinatr salary supprt will utilize thse funds that are raised by lcal CTF Chapters, and their respective vlunteer cmmunity, n behalf f the Fundatin. This is explained in mre detail belw. The Clinic Crdinatr is NOT an emplyee f CTF but f the Clinic r f the hspital/academic center/schl f medicine/etc. with which the Clinic is affiliated. Surce f CTF Clinic Crdinatr salary supprt A key intent f this prgram is t have lcally raised dllars act lcally. CTF Clinic Crdinatr salary supprt will utilize funds raised fr the Fundatin by lcal CTF Chapters and their respective vlunteer cmmunities. Each CTF Chapter/vlunteer base must have prven fundraising capability t generate sufficient annual funds fr this. These psitins may be funded full- r part- time depending n the needs f the Clinic and the funds available. Funds will be disbursed t the participating institutins thrugh the Natinal Children s Tumr Fundatin ffice.

5 Pilt Guidelines 2006 The Fundatin will enter int an agreement with the participating CTF-endrsed NF Clinic t ensure a minimum f tw years f supprt will be prvided fr the Clinic Crdinatr at the initial level f supprt. Cntinuatin beynd tw years will be fully cntingent n the ability f the CTF Chapter/vlunteer base t raise the necessary funds. Where there is mre than ne CTF-endrsed NF Clinic within a city, and where it is a feasible and practical ptin, the Fundatin will cnsider supprting crdinated sharing f the CTF Clinic Crdinatr between tw sites. The Fundatin will als actively seek and encurage partnership with ther advcacy grups fr related disrders (e.g. tuberus sclersis) that might ffer an additinal surce f funding that, in sum, can fund supprt fr a full time Clinic Crdinatr. Rle and Functins f a CTF Clinic Crdinatr include but are nt limited t the fllwing: 1. First and fremst, t crdinate patient care. 2. Serve as the NF patient s first pint f prfessinal cntact within the NF clinic. 3. Be an integral member f the multidisciplinary team evaluating and treating NF patients in the clinic. Will serve as a liaisn between the patient/family and the clinic s physician(s) and ther staff. 4. Wrk with administrative staff t triage and priritize patient scheduling based n individual need and ensure scheduling f required appintments. 5. Facilitate the prvisin f care regardless f patient age. In the setting f a pediatric hspital facilitate access t cntinuity f care acrss age grups. 6. Lg cnsented patient data int CTF-endrsed central database/nf patient registries with apprpriate prtectin f patient cnfidentiality. 7. Encurage and facilitate patient participatin in clinical trials and research. 8. Participate in the Netwrk f CTF Clinic Crdinatrs. 9. Cntinue strengthening the relatinship between the lcal NF cmmunity and the NF clinic and ensure the Chapter cntact is as useful as pssible t the newly diagnsed patient within the cntext f medical center guidelines. This may include establishing a CTF Chapter cntact within the cntext f the clinic. Many medical centers have vlunteer training prgrams; the CTF Clinic Crdinatr culd guide Chapter cntacts tward these.

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